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The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

NCT04001582 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 1018

Last updated 2024-05-09

No results posted yet for this study

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.

Conditions

Interventions

OTHER

Patient Registry

Participants who have volunteered to participate will complete various questionnaires relating to their condition.

Sponsors & Collaborators

  • Newcastle University

    lead OTHER

Principal Investigators

  • Chiara Marini-Bettolo, MD, PhD · John Walton Muscular Dystrophy Research Centre

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-05-31
Primary Completion
2040-01-31
Completion
2040-01-31

Countries

  • United Kingdom

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04001582 on ClinicalTrials.gov