The United Kingdom National Registry for Myotonic Dystrophy
The UK National Registry for Myotonic Dystrophy
Newcastle University
900 participants
May 1, 2013
OBSERVATIONAL
Conditions
Summary
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.
Eligibility
Inclusion Criteria1
- All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results
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Interventions
Participants who have volunteered to participate will complete various questionnaires relating to their condition.
Locations(1)
View Full Details on ClinicalTrials.gov
For the most up-to-date information, visit the official listing.
NCT04003363