New imaging study aims to track muscle decline in myotonic dystrophy

NCT ID NCT07362875

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Recruiting now This study
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Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
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Paused for now. It may or may not start again.
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Running, but no longer taking on new participants.
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The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
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Cancelled before anyone took part.

Expanded access (not trials)

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Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
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Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

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First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is looking for 75 adults with myotonic dystrophy (a muscle disease) and healthy volunteers to test new muscle imaging techniques. The goal is to find better ways to measure muscle changes over time, which could help future treatment studies. Participants will undergo MRI scans and muscle strength tests.

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Study facts

What this study's own registry entry says, in plain language.

Participants

About 75 people

The number the study aims to enrol. It can still change while the study runs.

Started

May 2025

Expected to finish

May 2029

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The selection criteria will minimize the heterogeneity effects and mirror DM subjects likely to be selected for clinical trials, who are typically mildly to moderately affected. Subjects will be recruited from the Wake Forest Neuromuscular Clinic and nearby medical centers (Duke University, UNC Chapel Hill, and Atrium Health in Charlotte). Since DM2 is rarer than DM1 and patients live across the country, additional recruitment efforts will target DM2 subjects through the Myotonic Dystrophy Foundation Family Registry (MDFR).

Ages

18 to 65 years

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

How to take part

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  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

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  3. A doctor treating you

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Contacts and locations

Locations

  • Wake Forest University Health Sciences

    RECRUITING

    Winston-Salem, North Carolina, 27157, United States

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