The Myotonic Dystrophy Family Registry currently has over 1,400 participants, making it one of the largest and most up-to-date myotonic dystrophy (DM) registries in the world. If you’ve been diagnosed with DM1 or DM2, including congenital or juvenile onset, or are the primary caregiver for some who has, and you haven’t already joined the Registry, we need you!
By participating in the Registry you can help researchers from industry and academia identify potential clinical trial participants and research study subjects, and increase understanding of the impact and complexity of this disease.
The Registry is patient-driven, which means you’re in charge of your information. You can opt out of the Registry at any time, and you can also visit the Registry website to review de-identified (anonymous) data and information the same way that registered researchers do. Your individual information is kept completely confidential. Data in patient registries is typically considered out of date and less useful if it is not updated at least every 18 months, so we’ll remind you to log back into the Registry to review and update your survey occasionally.
Click here to go to the Registry website, read and sign the consent form, and get started.
If you are already a Registry participant, thank you! You have helped make it a real success. Be sure to log into and update your survey responses soon; we will hold a drawing for Apple iPads for current Registry members who update their responses by September 30 as well!
Questions? Contact the Registry Coordinator for more information.