The UK National Registry for Myotonic Dystrophy

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
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
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results

Locations
Other Locations
United Kingdom
John Walton Muscular Dystrophy Research Centre
RECRUITING
Newcastle Upon Tyne
Contact Information
Primary
Registry Project Manager and Curator
helen.walker2@newcastle.ac.uk
0191 2418640
Backup
Registries Team
registries@ncl.ac.uk
Time Frame
Start Date: 2013-05
Estimated Completion Date: 2030-12
Participants
Target number of participants: 900
Treatments
Participants with Myotonic Dystrophy
Sponsors
Leads: Newcastle University

This content was sourced from clinicaltrials.gov

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