700-Patient study seeks key clues to muscle disease

NCT ID NCT03981575

Recruiting now Knowledge-focused Sponsor: Virginia Commonwealth University Source: ClinicalTrials.gov ↗

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

Summary

This study is following 700 adults with myotonic dystrophy type 1 (DM1) over two years. Researchers are measuring walking speed, lung function, and muscle tissue changes to find reliable markers of disease progression. The goal is to improve future clinical trials by better understanding how DM1 behaves 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 study could provide the tools needed to design better treatments for myotonic dystrophy type 1.
What could go wrong: This is an observational study, not a treatment trial. It may not directly benefit participants and results depend on consistent data collection over 24 months.

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

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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.

DM1 MYOTONIC DYSTROPHY 1

Contacts and locations

Locations

Centro Clinico NeMO
COMPLETED

Milan, Italy
Friedrich Baur Institute, Ludwig-Maximilians-Universität München
RECRUITING

München, Germany
Houston Methodist Neurological Institute
RECRUITING

Houston, Texas, 77030, United States
Kansas University Medical Center
RECRUITING

Kansas City, Kansas, 66160, United States
Ohio State University
RECRUITING

Columbus, Ohio, 43210, United States
Radboud University Medical Center
RECRUITING

Nijmegen, Netherlands
St. George's, University of London
RECRUITING

London, United Kingdom
University College London
RECRUITING

London, United Kingdom
University of Auckland
RECRUITING

Auckland, New Zealand
University of California, Los Angeles
RECRUITING

Los Angeles, California, 90095, United States
University of California, San Diego
RECRUITING

La Jolla, California, 92703, United States
University of Colorado - Denver
RECRUITING

Denver, Colorado, 80204, United States
University of Florida
RECRUITING

Gainesville, Florida, 32611, United States
University of Iowa
RECRUITING

Iowa City, Iowa, 52242, United States
University of Rochester
RECRUITING

Rochester, New York, 14642, United States
Université de Sherbrooke
ACTIVE_NOT_RECRUITING

Québec, Canada
Virginia Commonwealth University
RECRUITING

Richmond, Virginia, 23298, United States

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