Remote Assessments and Genetic Determinants of Myotonic Dystrophy
Key facts
- Who runs it
- University of Rochester
- Where
- Rochester, United StatesSee the site
- Trial code
- Status
- Recruiting
- People taking part
- 1,000 people, planned
- Started
- 10 May 2022
- Expected to end
- 1 Jan 2030
- Type of study
- Observational
- Record updated
- 1 April 2026
Who can take part
- Age
- 18 years to 88 years
- Sex
- Women and men
- Healthy volunteers
- Cannot take part
The registry criteria, word for word
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Who can take part
- Age 18-88 years
- Clinical diagnosis of DM1
- English speaking
- Able to provide informed consent
- Available wifi
Check if you might fit
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 88 years old?
Where in United States
- University of RochesterRochester, United StatesContact: Jeanne DekdebrunTaking people
About the trial
What the trial wants to find out
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.
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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
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- REACH DM - Remote Assessments and Genetic Determinants of Myotonic Dystrophy
- Fit questions
- Built from NCT07505342, who can take part
- Record updated
- 1 April 2026