The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

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.

NCT Number	NCT04001582
Lead Sponsor	Newcastle University
Conditions	Facioscapulohumeral Muscular Dystrophy
Enrollment	1,018 participants
Start Date	2013-05
Primary Completion	2040-01 (estimated)
Study Completion	2040-01 (estimated)
Updated on ClinicalTrials.gov	2024-05-09