San Francisco, California 94129


Purpose:

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.


Study summary:

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.


Criteria:

Inclusion Criteria: - Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test) Exclusion Criteria: - Not diagnosed with DM, unaffected family members


NCT ID:

NCT02398786


Primary Contact:

Study Chair
Molly White
Myotonic Dystrophy Foundation

Molly White
Phone: 415-800-7745
Email: coordinator@myotonicregistry.org


Backup Contact:

N/A


Location Contact:

San Francisco, California 94129
United States

Molly White
Phone: 415-800-7745
Email: coordinator@myotonicregistry.org

Site Status: Recruiting


Data Source: ClinicalTrials.gov

Date Processed: November 23, 2017

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