NCT04003363 The United Kingdom National Registry for Myotonic Dystrophy
| NCT ID | NCT04003363 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Newcastle University |
| Condition | Myotonic Dystrophy |
| Study Type | OBSERVATIONAL |
| Enrollment | 900 participants |
| Start Date | 2013-05 |
| Primary Completion | 2030-01 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 900 participants in total. It began in 2013-05 with a primary completion date of 2030-01.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief 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 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
Contact & Investigator
Chiara Marini-Bettolo, MD, PhD
PRINCIPAL INVESTIGATOR
John Walton Muscular Dystrophy Research Centre
Frequently Asked Questions
Who can join the NCT04003363 clinical trial?
This trial is open to participants of all sexes, studying Myotonic Dystrophy. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT04003363 currently recruiting?
Yes, NCT04003363 is actively recruiting participants. Contact the research team at helen.walker2@newcastle.ac.uk for enrollment information.
Where is the NCT04003363 trial being conducted?
This trial is being conducted at Newcastle upon Tyne, United Kingdom.
Who is sponsoring the NCT04003363 clinical trial?
NCT04003363 is sponsored by Newcastle University. The principal investigator is Chiara Marini-Bettolo, MD, PhD at John Walton Muscular Dystrophy Research Centre. The trial plans to enroll 900 participants.