Actively Recruiting
The United Kingdom National Registry for Myotonic Dystrophy
Led by Newcastle University · Updated on 2023-12-04
900
Participants Needed
1
Research Sites
917 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Myotonic dystrophy (dystrophia myotonica - DM) exists in two forms, usually referred to as DM1 (type 1) and DM2 (type 2). Both conditions are genetic disorders but each affects a different gene. DM1 is the most common adult-onset muscular dystrophy, and is thought to affect at least 1 in 8,000 people worldwide. The aim is to facilitate a questionnaire based research study in order to better characterise and understand the disease in the UK. By maintaining a national registry this will help identify potential participants eligible for clinical trials in the future.
CONDITIONS
Official Title
The United Kingdom National Registry for Myotonic Dystrophy
Who Can Participate
Eligibility Criteria
You may qualify if you...
- All patients with a confirmed Myotonic Dystrophy diagnosis or pending diagnosis confirmed by genetic testing are eligible for inclusion.
You will not qualify if you...
- There are no exclusion criteria for the registry.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom, NE1 3BZ
Actively Recruiting
Research Team
R
Registry Project Manager and Curator
CONTACT
R
Registries Team
CONTACT
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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