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Remote Assessments and Genetic Determinants of Myotonic Dystrophy
REACH DM - Remote Assessments and Genetic Determinants of Myotonic Dystrophy
Who can join
Ages 18 to 88 · All sexes
Full eligibility criteria
Inclusion Criteria: * Age 18-88 years * Clinical diagnosis of DM1 * English speaking * Able to provide informed consent * Available wifi
About the study
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 the same family, some people may have mild problems, while others are strongly affected. The goal of this study is to find out more about what is causing these differences. To accomplish this, investigators will study the effects of DM1 on skeletal and smooth muscles, the heart, and the nervous system. Then, investigators will evaluate genetic differences with a blood sample.
* Participants will receive a toolkit in the mail which includes all necessary equipment to participate in the study, including an iPad with video conferencing software. * Then the study team will connect with participants via videoconferencing for medical interview about DM1 symptoms and functional assessments * Participants will have their blood drawn in a lab in their community or using a home draw device, and ship it to us for research genetic analysis * Participants can chose to have their research genetic test result returned to them
Sponsor: University of Rochester · Participants: 1,000 · Started: May 10, 2022
Contact the study team
- Jeanne Dekdebrun · Phone: 585-275-0420
Official record on ClinicalTrials.gov — NCT07505342
Locations in the U.S.
| New York | University of Rochester, Rochester |
Conditions
From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.