MDF takes its role as an advocate for the myotonic dystrophy community very seriously; we are committed to increasing visibility and understanding of DM, improving the quality of life of people living with this disease, and doing our part to accelerate research progress toward treatments and a cure for DM. Our latest effort is the upcoming MDF Patient Registry.
In early 2013, you will be invited to log into the new registry to register and answer a short questionnaire. By joining the MDF Patient Registry, you’ll help MDF:
- Organize the DM community across the U.S.
- Ensure that we have a large registry population ready to respond to requests for research studies and clinical trials, and
- Demonstrate to the pharmaceutical industry and other key stakeholders that DM is a rare disease worth investment and investigation.
The MDF Patient Registry will be web-based and patient-driven, which means you’ll be 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 charts, reports and de-identified (anonymous) data and responses the same way that registered researchers will.
The MDF Patient Registry will keep you apprised of upcoming research studies, trials and other news, and by joining the registry your information will be available to researchers and pharmaceutical companies recruiting participants for upcoming studies and trials.
The MDF Patient Registry will work in partnership with the National DM & FSHD Registry housed at the University of Rochester to promote cross-registration and to collaboratively communicate to the community about research opportunities, trials and related information. Both registries are important to DM research efforts: the MDF Patient Registry will work to capture, organize and engage the highest volume of DM family members across the U.S., and the Nat’l DM & FSHD Registry will continue to focus on developing longitudinal, deep-data records on DM patients that will promote long-term DM understanding and discovery and which are ideal for research.
The MDF Patient Registry will launch in early 2013; what can you do now? Gather any genetic test results and medical records, watch for additional information regarding the MDF Patient Registry launch and make sure your family members and DM community friends know about it. We need your help to make the MDF Patient Registry a success.
Questions? Click here to send us an email, or call us at 86-myotonic, or 866-968-6642.