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The United Kingdom National Registry for Myotonic Dystrophy

Recruitingn/aAges any - anyAllNewcastle University
NCT04003363 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
Inclusion Criteria: * All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results Exclusion Criteria: * There are no exclusion criteria for the registry
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What it tests

  • Patient Registry
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Where

1 site
John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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