The United Kingdom National Registry for Myotonic Dystrophy
ConditionMyotonic Dystrophy
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorNewcastle University
About this trial
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 criteria
Qualifiers
All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results
Disqualifiers
There are no exclusion criteria for the registry
Trial design
Treatments tested in this trial
- Patient Registry
Treatment groups
900 Participants
are divided into 1 treatment groupLocations
1John Walton Muscular Dystrophy Research CentreNE1 3BZ, Newcastle upon Tyne United Kingdom
Sponsors and collaborators
Newcastle University
Lead sponsor
Source ClinicalTrials.gov