Remote Assessments and Genetic Determinants of Myotonic Dystrophy

Recruiting Observational Study
Myotonic Dystrophy Type 1 (DM1) DM1
No Study Drug Researchers observe your health over time — no experimental treatment is given.
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At a Glance
Age
18 – 88
Sex
Any
Study type
Observational
Participants needed
1,000 (estimated)
Sponsor
University of Rochester · Other
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About This Trial
The goal of this observational study, conducted in participants' homes and requiring no travel to a study site, is to better understand disease variability in people with myotonic dystrophy type 1 (DM1) and to identify effective ways to measure symptoms. Myotonic dystrophy is one of the most variable diseases. Some people develop symptoms when they are young, others when they are much older. In t…
Trial Locations
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Eligibility Criteria
Inclusion Criteria: * Age 18-88 years * Clinical diagnosis of DM1 * English speaking * Able to provide informed consent * Available wifi
Contacts

Jeanne Dekdebrun

585-275-0420

REACHDM@URMC.rochester.edu

CONTACT