Quantitative MRI measurement of muscle changes in myotonic dystrophy

Development of Quantitative Muscle Imaging as a Biomarker of Disease Endpoints in Myotonic Dystrophy (DeQoDE-DM)

Observational Wake Forest University Health Sciences · NCT07362875

This project will test whether advanced quantitative MRI scans can measure muscle structure and link to disease severity and RNA changes in adults with myotonic dystrophy.

Quick facts

Study typeObservational
Enrollment75 (estimated)
Ages18 Years to 65 Years
SexAll
SponsorWake Forest University Health Sciences Academic / other
Locations1 site (Winston-Salem, North Carolina)
Trial IDNCT07362875 on ClinicalTrials.gov

What this trial studies

This single-site observational project uses quantitative magnetic resonance imaging (qMRI) to characterize muscle structure in adults with genetically or clinically confirmed DM1 or DM2 and in healthy control volunteers. Participants will have non-invasive MRI scans and standardized clinical evaluations, and available muscle tissue RNA splicing data will be compared to imaging measures. The aim is to create a comprehensive baseline of qMRI findings and determine how those imaging measures relate to clinical endpoints and RNA-associated disease processes. Establishing reliable qMRI biomarkers could improve trial design and reduce the need for repeated muscle biopsies.

Who should consider this trial

Good fit: Adults 18–65 with clinically or genetically confirmed DM1 or DM2 who are clinically affected (muscle weakness or myotonia), ambulatory without a walker, and able to give informed consent are ideal candidates, with healthy adults 18–65 eligible as controls.

Not a fit: People with MRI contraindications (pacemaker, defibrillator, metal implants), BMI over 35, prior lumbar/leg surgery or neuropathy, pregnancy, non-ambulatory status, or outside the 18–65 age range are unlikely to participate or benefit from this protocol.

Why it matters

Potential benefit: If successful, qMRI could provide a non-invasive biomarker to track disease progression and treatment response, reducing reliance on muscle biopsies.

How similar studies have performed: Quantitative MRI has shown promise as a biomarker in other neuromuscular disorders, but comprehensive qMRI characterization and direct correlation with RNA splicing outcomes are relatively untested in myotonic dystrophy.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

DM subjects

* Age 18 - 65 years
* Diagnosis of DM1 or DM2 by clinical or genetic criteria. If DM1 or DM2 was diagnosed by clinical criteria, a first-degree relative must have genetic testing confirmation and sign a genetic consent form to release their genetic information
* Clinically affected, as defined by muscle weakness or myotonia
* Ambulate independently (a walker is not permitted)
* Able to provide informed consent for participation in the study

Control subjects

* Age 18 - 65 years old
* Healthy as defined by no significant medical or neurological conditions
* Able to provide informed consent for participation in the study

Exclusion Criteria:

* Cardiac pacemaker, defibrillator, metal implants, or other contraindications for MRI
* Use of anabolic or catabolic agents within one year of entry
* History of lumbar spine or leg surgery, lumbar radiculopathy, or peripheral neuropathy
* BMI \> 35 because obesity compromises positioning on the MR scanner
* Pregnancy
* For muscle biopsy, history of bleeding disorders or on anticoagulation. Subjects taking nonsteroidal anti- inflammatory agents will be asked to discontinue these medications 7 days prior to muscle biopsy.

Where this trial is running

Winston-Salem, North Carolina

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Myotonic Dystrophydystrophia myotonicamuscular dystrophyskeletal myopathy
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.