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New study aims to sharpen tools for measuring muscle decline in common adult muscular dystrophy

NCT ID NCT07362316

Knowledge-focused Sponsor: Institut de Myologie, France Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
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 Results may not be published yet.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.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
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

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

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

Summary

This study followed 30 adults with myotonic dystrophy type 1 (Steinert disease) and 30 healthy volunteers over three years to see how muscle strength and function change naturally over time. Researchers measured things like muscle power, walking ability, and nerve responses to find the most reliable tests for future treatment trials. The goal was not to treat the disease, but to identify the best ways to track progression in future studies.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

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

Participants

50 people

The number who actually took part.

Started

Sep 2010

Finished

Dec 2015

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

Patients will be recruited during neurological consultations at hospitals participating in the study. Healthy subjects will be recruited either from among the patients' friends and family members who are known not to carry the mutation, or through announcements made during consultations.

Ages

18 to 50 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: For patients: * Diagnosed with myotonic dystrophy type 1 confirmed by genetic analysis * Presenting with motor weakness (MIRS score of 3 or 4) * Able to walk for ten minutes * Able to be informed and provide informed consent * Affiliated with a French social security scheme For healthy subjects: * Matched in age (± 1 year) and sex to patients * Able to be informed and provide informed consent * Affiliated with a French social security scheme Exclusion Criteria: * for patients and control subjects * Participation in another ongoing biomedical research study * Orthopaedic disorders of the ankle or hand * Epilepsy * Progressive cancer * Insulin-dependent diabetes * Uncontrolled heart disease, congestive heart failure, uncontrolled heart rhythm disorders (supraventricular or ventricular) or severe cardiac conduction disorders (AVB II or III or HV \> 70 ms) without pacemaker (patients with pacemakers may be included) \[echocardiography within one year prior to inclusion\] * Unstabilised and uncontrolled hypertension under treatment (or treated with Propranolol, Prazosin or Clonidine) or blood pressure greater than 160/90 mmHg in the supine position * Dementia syndrome, major depressive disorder * History of drug or alcohol abuse in the last six months * Vital capacity \< 50% or total lung capacity \< 50%, daytime mechanical ventilation (EFR less than 2 years old) * Hypercapnia (PaCO2 ≥ 8 Kpa or 60 mmHg) (blood gas less than 2 years old) * Visual disorders incompatible with the performance of the tests (e.g. cataracts, etc.) * Women who are pregnant, breastfeeding or not using effective contraception * Patients treated with cyclosporine * Any condition that, in the investigator's opinion, would be incompatible with the proper conduct of the study.

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Conditions

The condition(s) this trial relates to.

myotonic dystrophy myotonic dystrophy type 1

As listed by the trial registrant

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

Steinert myotonic dystrophy

Contacts and locations

Locations

  • Centre de recherche du CHU de Québec-Université Laval

    Laval, Canada

  • Institut de Myologie

    Paris, Île-de-France Region, 75013, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.