Myotonic Dystrophy Foundation

The following studies are ongoing for myotonic dystrophy. If you would like to add a study to this list, please send an email to: info@myotonic.org

University of Rochester Myotonic Dystrophy Research Study: "Pathogenesis and Progression in Myotonic Dystrophy"

The purpose of this study is to learn more about what causes the muscle weakness and stiffness (myotonia) in myotonic dystrophy. This information is needed to help scientists design new treatments for myotonic dystrophy. A second purpose of this study is to find the best way to measure whether myotonic dystrophy is getting better or worse, and determine how this condition changes over time. This information is needed to plan future studies to test treatments for myotonic dystrophy. Learn more

University of Minnesota Muscular Dystrophy Center Research Study: "Central Nervous System in Myotonic Dystrophy"

The purpose of this study is to learn more about the changes that occur in the brain of people with myotonic dystrophy types 1 and 2. Participation involves having an MRI of the brain, neuropsychological testing (testing to see how you learn and remember things) and collection of blood and skin samples. You must be between the ages of 25 and 45 for the  adult study and 8 and 18 for the adolescent study. Participation may require a 1-2 night stay  in the Twin Cities. Funding is available for travel, lodging and food. For more information or to sign up please contact Cameron Naughton at (612) 625-4882 or by email at naug0009@umn.edu.

The most comprehensive list of clinical trials for myotonic dystrophy can be found at the ClinicalTrials.gov website.  Search for current and past clinical trials.