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Clinical Trial Summary

The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials.


Clinical Trial Description

The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) such as disease symptoms and demographic information to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials. The Registry supports trials and studies, making it easier for researchers to explore data and identify possible trial and study participants. It is the first DM registry that gives community members the opportunity to explore anonymous Registry data, to see what the DM community looks like and what others with DM experience. It also provides information on the community of people living with DM, giving researchers and other medical professionals the opportunity to improve how they treat those affected with DM and learn more about how and why certain treatments work and don't work. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT02398786
Study type Observational [Patient Registry]
Source Myotonic Dystrophy Foundation
Contact Sofia Olmos, PhD
Phone 415-800-7777
Email coordinator@myotonicregistry.org
Status Recruiting
Phase
Start date February 2013
Completion date February 2025

See also
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