Myotonic Dystrophy Type 2 Clinical Trials

Find Myotonic Dystrophy Type 2 Clinical Trials Near You

REACH DM - Remote Assessments and Genetic Determinants of Myotonic Dystrophy

Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY

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

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Maximum Age: 88
Healthy Volunteers: f
View:

• Age 18-88 years

• Clinical diagnosis of DM1

• English speaking

• Able to provide informed consent

• Available wifi

Locations
United States
New York
University of Rochester
RECRUITING
Rochester
Contact Information
Primary
Jeanne Dekdebrun
REACHDM@URMC.rochester.edu
585-275-0420
Time Frame
Start Date: 2022-05-10
Estimated Completion Date: 2030-01-01
Participants
Target number of participants: 1000
Sponsors
Collaborators: Myotonic Dystrophy Foundation (MDF), Muscular Dystrophy Association, National Institutes of Health (NIH)
Leads: University of Rochester

This content was sourced from clinicaltrials.gov