About the Study

Who runs this study?

Dr. Ami Mankodi, M.D. (Principal Investigator), National Institute of Neurological Disorders and Stroke.

What is this study about?

To fully assess how myotonic dystrophy causes variable symptoms, to find the best way to measure whether myotonic dystrophy is getting better or worse, and determine how it changes over time. This information is needed to help scientists design new treatments for myotonic dystrophy.

What kind of commitment is involved?

We need participants willing to come to the NIH Clinical Center for 3 visits: at baseline, 1-year from baseline and finally at 2-years from baseline. Each visit may last up to seven days and may require you to be admitted to the clinical center.

How can I ask questions or ask for help?

Email us at ndegevj@mail.nih.gov (or click on Contact). We will respond within two business days.