The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
Launched by NEWCASTLE UNIVERSITY · Jun 27, 2019
Trial Information
Current as of July 26, 2025
Recruiting
Keywords
ClinConnect Summary
The United Kingdom Facioscapulohumeral Muscular Dystrophy (FSHD) Patient Registry is a study aimed at better understanding FSHD, which is a type of muscle disease that affects how the muscles work. This condition is relatively common, affecting about 1 in 20,000 people, and can impact up to 3,000 individuals in the UK. The registry collects information through questionnaires to help researchers learn more about the disease and identify potential participants for future clinical trials.
If you or someone you know has been diagnosed with FSHD or is waiting for a diagnosis and lives in the UK, you may be eligible to participate in this study. Unfortunately, individuals with other confirmed neuromuscular diseases or those living outside the UK cannot take part. Participants can expect to answer questions about their experiences with FSHD, which will contribute valuable information to help improve understanding and treatment of this condition. Your involvement could play an important role in advancing research for FSHD.
Gender
ALL
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
About Newcastle University
Newcastle University is a leading research institution located in the United Kingdom, renowned for its commitment to advancing healthcare through innovative clinical trials and scientific research. The university's Clinical Trials Unit plays a pivotal role in the design, coordination, and execution of high-quality clinical studies, focusing on a wide range of therapeutic areas. With a multidisciplinary team of experts, Newcastle University fosters collaboration between academia, industry, and healthcare providers, ensuring that research findings translate into meaningful advancements in patient care. Its dedication to excellence and ethical standards positions Newcastle University as a trusted sponsor in the clinical research landscape.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Newcastle Upon Tyne, , United Kingdom
Patients applied
Trial Officials
Chiara Marini-Bettolo, MD, PhD
Principal Investigator
John Walton Muscular Dystrophy Research Centre
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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