How You Can Help

Registry Members

Annual updates are sent to each member of the Registry every year. The purpose of the update is to identify changes in symptoms, medications, and other factors related to your quality of life. It is also useful for updating our records if you have moved or changed your phone number. The Registry has been collecting annual update information for over six years, making our database one of the largest datasets available on the progression of DM and FSHD. The data from annual updates have been used to study the progression of congenital myotonic dystrophy, infantile FSHD, and gastrointestinal (GI) symptoms in DM1.

The Registry staff is pleased that so many of our members remain interested year after year. Over 75% of our members have returned at least one annual update. We hope to continue receiving such an excellent response. We encourage you to complete and return the form even if you do not have an opportunity to review your information right away. If there haven’t been any changes in your information, we still would like to hear from you!

Healthcare Professionals

The success of the Registry has not been possible without the support of healthcare professionals and patient advocates. The recruitment of patients through healthcare organizations has been vital to the growth of the Registry. We welcome your assistance to help us maintain our momentum and to facilitate recruitment.

We would be very happy to supply your clinic with enrollment packets or an informational flyer describing the Registry. Our contact information is listed below. Or, the Registry recruitment flyer is also available here to downloadhere and to distribute to patients, family members, and patient advocacy groups. Please note that patients are under no obligation to join the Registry. When enrolled, patients can choose whether or not to contact study investigators that are approved to recruit through the Registry. The Registry does not give out identifiable information to investigators or other entities.

We welcome the opportunity to further discuss the Registry with you, your clinic staff, or patients.

Contact us

We are happy to answer your questions and welcome your opinions, ideas, and suggestions for the Registry. We will also gladly send doctors, patients, researchers, and advocacy groups flyers or enrollment packets. Please call us toll free at (888) 925-4302 or locally at 585-506-00049. Please feel free to email us with your requests or suggestions as well. Thank you!


Last Reviewed and Updated 10/08/09