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New study aims to uncover why some myotonic dystrophy patients develop low breathing

NCT ID NCT03764150

Knowledge-focused Sponsor: University Hospital, Lille 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study followed 113 adults with myotonic dystrophy (Steinert's disease) for 5 years to find out what factors lead to low breathing (hypoventilation). Researchers measured lung function, sleepiness, fatigue, and thinking skills. The goal is to better understand which patients are at risk and how breathing problems progress over time.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this could help doctors predict and manage breathing problems in myotonic dystrophy patients earlier.
What could go wrong
This is an observational study, not a treatment trial. It may not lead to direct changes in care, and results may not apply to all patients.

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

113 people

The number who actually took part.

Started

Jun 2010

Finished

Jun 2023

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

patient with a myotonic dystrophy of Steinert who consults in pneumology and who will have Respiratory functional exploration

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Myotonic dystrophy of Steinert genetically confirmed (number of known CTG repeats), in its classical form of adult Exclusion Criteria: * Inability to perform EFR assessment or polysomnography * Moderate to severe asthma according to the GINA classification * moderate to severe COPD (\> stage 1 of the GOLD recommendations) * Other significant respiratory pathology * Patient already on NIV, CPAP or under oxygen therapy * Impossibility of receiving enlightened information * Inability to participate in the entire study

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Conditions

The condition(s) this trial relates to.

muscle tissue disorder myotonic dystrophy myotonic dystrophy type 1 sleep apnea syndrome

As listed by the trial registrant

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

Myotonic dystrophy, steinert

Contacts and locations

Locations

  • Ap-Hp Hu Paris Site Raymond Poincare

    Garches, France

  • Ap-Hp Hu Pitie Salpetriere

    Paris, France

  • Centre Hospitalier Regional D' Angers

    Angers, France

  • Chu Montpellier

    Montpellier, France

  • Chu de Nantes :Site Hôtel-Dieu- Hme - Nantes 1

    Nantes, France

  • Hôpital Calmette, CHRU

    Lille, France