Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy.
Germán Morís, Libby Wood, Roberto FernáNdez-Torrón...
https://pubmed.ncbi.nlm.nih.gov/29053898Actively Recruiting
All Genders
ID04001582
The UK Facioscapulohumeral Muscular Dystrophy Patient Registry
Led by Newcastle University · Updated on 2024-05-09
1018
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Facioscapulohumeral Dystrophy (FSHD) is a common type of neuromuscular dystrophy affecting about one in 20,000 people, including around 3,000 in the UK. This research aims to better understand FSHD in the UK by collecting detailed patient information through a registry. The registry helps identify individuals who may be eligible for future clinical trials and supports questionnaire-based studies to characterize the disease. Participants with a confirmed or pending diagnosis of FSHD living in the UK can join the registry. Parents or guardians may register children under 16 years old. After consenting, participants enter their information on the registry platform and are invited to update it annually. Healthcare providers involved in their care may also contribute clinical or genetic data with consent. During participation, individuals complete various questionnaires each year, including assessments of pain, quality of life, and physical function. The registry collects data through patient self-report and optional clinician input, with ongoing updates. This observational study helps researchers gather valuable insights into FSHD progression and patient experiences over time.
CONDITIONS
Brief Title
The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry
Who Can Participate
All Genders
Eligibility Criteria
You may qualify if you...
- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.
You will not qualify if you...
- Any confirmed neuromuscular disease other than FSHD
- Living outside of the UK
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (online or in-person) for eligibility and consent
Monitoring
Duration - Ongoing with annual updates
Participants complete various questionnaires about their condition and may update their information annually.
Annual visits (online or in-person) to complete questionnaires
Trial Site Locations
Total: 1 location
1
John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom, NE1 3BZ
Actively Recruiting
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Research Team
R
Registry Project Manager and Curator
R
Registries Team
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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Published Research Related To This Trial
Phenotype may predict the clinical course of facioscapolohumeral muscular dystrophy.
Giulia Ricci, Philip Cammish, Gabriele Siciliano...
https://pubmed.ncbi.nlm.nih.gov/30895627Design, set-up and utility of the UK facioscapulohumeral muscular dystrophy patient registry.
Teresinha Evangelista, Libby Wood, Roberto Fernandez-Torron...
https://pubmed.ncbi.nlm.nih.gov/27159994