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The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

RecruitingN/A

Sponsor: Newcastle University

Conditions: Facioscapulohumeral Muscular Dystrophy

Interventions: Patient Registry

Countries: United Kingdom

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 overview

Sex: ALL

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility criteria

Inclusion Criteria:

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

Exclusion Criteria:

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

Locations (1)

Newcastle upon Tyne, United Kingdom