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

NCT ID NCT03764150

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.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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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.

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