The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

Recruiting now

Conditions studied: Facioscapulohumeral Muscular Dystrophy

In brief

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.

Key facts

Study ID

NCT04001582

Run by

Newcastle University

People needed

1018

Starts

2013-05-01

Expected to finish

2040-01-01

Last updated by the study team

2024-05-09

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.

You may not qualify if…

• Any confirmed NMD other than FSHD
• Living outside of the UK

Where it is running

• John Walton Muscular Dystrophy Research Centre — Newcastle upon Tyne, United Kingdom (enrolling)

Full record on ClinicalTrials.gov

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