How You Can Help
Questionnaires are sent to each member of the Registry every year. These annual updates are important because they help us learn more about myotonic dystrophy and FSHD. Specifically, they help us identify changes in symptoms, medications, and other factors related to your quality of life. They can also help us update our records if you have moved or changed your phone number. The Registry has been collecting information annually for over eleven years, making our database one of the largest on the progression of DM and FSHD. The information you provide every year has been used to study topics such as the progression of congenital myotonic dystrophy, infantile FSHD, and gastrointestinal (GI) symptoms in DM1.
We are happy that so many of our members continue to complete these forms year after year. We hope o this motivation will continue! We encourage you to complete these form when you can. If there haven’t been any changes in your information, we still would like to hear from you!
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 by sharing information about the Registry with your patients.
We would be happy to supply you with Registry enrollment packets or flyers to distribute. Please contact us, or download our flyer.
We welcome the opportunity to discuss the Registry with you. We are happy to answer your questions and welcome your ideas and suggestions. Please contact us toll-free at (888) 925-4302 or by email.
Jim Hilbert and Liz Luebbe
Toll free: (888) 925-4302
Help us make a difference!