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Introduction

The National Institute of Neurological Disorders and Stroke at the National Institutes of Health is recruiting persons who have myotonic dystrophy type 1 or type 2 for an observational study.

Myotonic dystrophy is a long-term genetic disorder that affects muscle function. Symptoms include gradually worsening muscle loss and weakness. Muscles often contract and cannot relax. Researchers want to find out how various tests for DM1 or DM2 change over 2 years, to help them develop better tests for people with these diseases.

We are looking for volunteers who:

  • have a genetic diagnosis of myotonic dystrophy type 1 or type 2
  • age 11-70 years (inclusive)

Data and samples will be shared with Myotonic Dystrophy Clinical Research Network (DMCRN) investigators participating in Establishing Biomarkers and Clinical Endpoints in Myotonic Dystrophy Type 1 (ENDDM1) study. Participation in this project is entirely voluntary.

To get started:

  • Navigate through the menu to learn more about the study.
  • Log in to the application and fill out questionnaires.

Please contact us if you have any questions or concerns.