Actively Recruiting
REACH DM - Remote Assessments and Genetic Determinants of Myotonic Dystrophy
Led by University of Rochester · Updated on 2026-04-01
1000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Rochester
Lead Sponsor
M
Muscular Dystrophy Association
Collaborating Sponsor
AI-Summary
What this Trial Is About
This observational study focuses on people with myotonic dystrophy type 1 (DM1), a disease that varies widely in how it affects individuals. Researchers aim to better understand the reasons behind these differences by studying how DM1 impacts skeletal and smooth muscles, the heart, and the nervous system. They also plan to analyze genetic differences through blood samples to help identify effective ways to measure symptoms. Participants will take part from their own homes without needing to travel to a study site. They will receive a toolkit by mail, including an iPad with video conferencing software for medical interviews and functional assessments conducted remotely. Blood samples will be collected either at a local lab or through a home draw device and sent for genetic testing. Participants can choose to receive their genetic test results if they wish. During the study, participants will be assessed remotely over 12 months for grip strength, cognitive function, activity levels, and mobility using the Timed Up and Go test. Genetic testing is done at the start of the study. The research team will monitor symptoms and function through video calls and collected data, allowing for ongoing evaluation without in-person visits. The study will continue until 2030, and participants can engage comfortably from home throughout this period.
CONDITIONS
Brief Title
Remote Assessments and Genetic Determinants of Myotonic Dystrophy
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Age between 18 and 88 years
- Clinical diagnosis of myotonic dystrophy type 1 (DM1)
- English speaking
- Able to provide informed consent
- Access to wifi at home
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - 12 months
Participants are remotely assessed for grip strength, cognitive function, physical activity, and mobility over time.
Remote assessments conducted periodically over 12 months
Trial Site Locations
Total: 1 location
1
University of Rochester
Rochester, New York, United States, 14642
Actively Recruiting
Research Team
J
Jeanne Dekdebrun
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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