Help Shape the Future of Myotonic Dystrophy (DM) Care
Take the DM INSIGHT Survey Today!
The Myotonic Dystrophy Foundation (MDF) is launching a new study to better understand the real-world experiences of people living with myotonic dystrophy (DM1 or DM2).
Your voice can help improve access to care, inform research, guide policy, and ensure new treatments reach the people who need them most.
Please select the survey that best matches your experience:
Why Your Voice Matters
Care for myotonic dystrophy is changing. New therapies are on the horizon—but access is not guaranteed. Healthcare systems and insurance providers need data to make informed decisions.
That's where you come in!
By sharing your experiences through the DM INSIGHT survey, you’ll directly inform efforts to improve education, research, and care for the myotonic dystrophy community.
Who Can Participate?
We are inviting adults in the U.S. and Canada who are:
- People living with DM1 or DM2
- Caregivers for someone living with DM
- Healthcare providers who diagnose or treat DM
Each survey takes approximately 20 minutes to complete.
What We’re Studying
For People Living with DM:
- Insurance and Financial Barriers: How hard is it to get coverage, referrals, or prior authorizations?
- Care Quality and Access: Are you able to see specialists? What are the travel or wait-time burdens?
- Disease Awareness & Decision-Making: What do you know about DM care guidelines, clinical trials, or anesthesia risks?
For Caregivers:
- Caregiver Burden: How much time and money does caregiving require? How do you help navigate treatment decisions and insurance?
For Healthcare Providers (HCP):
- Knowledge Gaps & Education Needs: What do HCPs know about diagnosing and managing DM? What additional training is needed to improve patient outcomes?
Be Part of the Change
New treatments for myotonic dystrophy are getting closer to approval—but that doesn’t guarantee access. Without strong data and advocacy, too many people may face delays or roadblocks to the care they need.
Your input can help change that! The DM INSIGHT study will help build a stronger care system—one that supports earlier diagnosis, informed decision-making, and fair access to new therapies for everyone affected by DM.
Your Experience Matters—Take the Survey Now!
Your voice is powerful. By taking this short survey, you help create a better future for all people and families affected by myotonic dystrophy.
Choose the option below that best describes you: