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The United Kingdom National Registry for Myotonic Dystrophy

NCT04003363 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 900

Last updated 2023-12-04

No results posted yet for this study

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.

Conditions

  • Myotonic Dystrophy

Interventions

OTHER

Patient Registry

Participants who have volunteered to participate will complete various questionnaires relating to their condition.

Sponsors & Collaborators

  • Newcastle University

    lead OTHER

Principal Investigators

  • Chiara Marini-Bettolo, MD, PhD · John Walton Muscular Dystrophy Research Centre

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2013-05-31
Primary Completion
2030-01-31
Completion
2030-12-31

Countries

  • United Kingdom

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT04003363 on ClinicalTrials.gov