Muscular Dystrophy Trial, Recruiting
Who may be able to join
AI generated eligibility summary. Written by an AI model from the official source data and checked on a sample basis. It can contain mistakes, so confirm anything important against the original source. How we use AI
Who might be able to join this trial:
- People aged 18 to 70 years old (inclusive).
- People who are able to provide written, voluntary consent before any study procedures begin — or, where a legal representative provides consent on someone's behalf, verbal agreement from the person themselves, with consent capacity assessed by a neurologist at the first visit.
- People who have a clinical diagnosis of Myotonic Dystrophy Type 1 (DM1), confirmed either by a genetic test or by having all three of the following: muscle stiffness (myotonia), muscle weakness in typical areas, and a close family member with similar findings.
- People who have a diagnosis of Congenital Myotonic Dystrophy (CDM), which means they had symptoms of myotonic dystrophy as a newborn (within the first 30 days of life) such as poor muscle tone, feeding difficulties, or breathing problems that required at least 3 days of hospital care, along with a genetic test showing an expanded DNA repeat (more than 200 CTG repeats) in themselves or a close family member.
Who may not be able to join:
- People with active kidney or liver disease, poorly controlled diabetes, poorly controlled thyroid problems, or an active cancer (other than a type of non-spreading skin cancer called in situ skin cancer).
- People currently experiencing alcohol or drug use disorder.
- People who are currently pregnant or planning to become pregnant during the study period.
- People with another medical condition that, in the opinion of the study doctor, could affect their ability to complete the study assessments (confirm with trial site).
- People who have used mexiletine or similar medications that treat muscle stiffness within 72 hours before any study visit.
Important: Always verify eligibility with the trial site directly before applying.
Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.
Contact this trial
Principal Investigator: Nicholas Johnson, MD, Virginia Commonwealth University
Phone: 804-828-6318
Contact details sourced from ClinicalTrials.gov. Verify directly with the trial site before attending.
GP referral letter
Print a one-page summary to share with your doctor.
Trial details
Where this trial is recruiting
Primary endpoints
Characterize the long-term disease progression- 10 meter walk/run; Characterize the long-term disease progression- vHOT; Characterize the long-term disease progression- grip strength; Characterize the long-term disease progression- ECG; Characterize the long-term disease progression- FVC; Characterize the long-term disease progression- DM1-Activ-c
Can't join this trial?
Data last synced from ClinicalTrials.gov: 28 July 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.