One of the primary goals of MDFR is to better understand and improve the lives of the people and families living with DM by building a large, robust database of information that will help:
- The research community launch clinical trials and studies
- Provide valuable quality-of-life information that MDF can use to advocate on behalf of the community
- Assist MDF in identifying the support and outreach programs that will be most useful to community members
- Educate people living with DM, their caregivers and family members about the larger DM community demographics, symptoms and experiences.
We hope that by providing this information and making it easier to identify potential participants for research studies and clinical trials we can empower people and families living with DM, raise the profile of this disease with key institutions and decision-makers, and accelerate research progress toward treatments and a cure for DM.
Professionals: Registered researchers and other professionals can access de-identified aggregate data from MDFR to identify target populations for trial/study planning and recruitment. If you are a study investigator, sponsor, or other research professional, register a profile to explore the database and use MDFR data analysis and report capabilities to learn more about DM and the community of people living with it. You can also contact MDFR to reach out on your behalf to follow up with potential candidates for clinical trials and research studies.
Participants: Registered participants (individuals and families living with DM and their caregivers) can access information about current clinical trials and research opportunities for individuals with myotonic dystrophy and stay current on research news and updates.