The United Kingdom National Registry for Myotonic Dystrophy

Recruiting Observational Study
Myotonic Dystrophy
No Placebo Group Every participant receives an active treatment — no one gets a placebo. No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Sex
Any
Study type
Observational
Participants needed
900 (estimated)
Sponsor
Newcastle University · Other
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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 chara…
Trial Locations
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Eligibility Criteria
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
Contacts

Registry Project Manager and Curator

0191 2418640

helen.walker2@newcastle.ac.uk

CONTACT

Registries Team

registries@ncl.ac.uk

CONTACT