The United Kingdom National Registry for Myotonic Dystrophy

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.

NCT Number	NCT04003363
Lead Sponsor	Newcastle University
Conditions	Myotonic Dystrophy
Enrollment	900 participants
Start Date	2013-05
Primary Completion	2030-01 (estimated)
Study Completion	2030-12 (estimated)
Updated on ClinicalTrials.gov	2023-12-04