Trial Parameters
Condition Myotonic Dystrophy
Sponsor Myotonic Dystrophy Foundation
Study Type OBSERVATIONAL
Phase N/A
Enrollment 3,500
Sex ALL
Min Age N/A
Max Age N/A
Start Date 2013-02
Completion 2030-02
All Conditions
Myotonic Dystrophy Congenital Myotonic Dystrophy Myotonic Dystrophy 1 Myotonic Dystrophy 2 Dystrophia Myotonica Dystrophia Myotonica 1 Dystrophia Myotonica 2 Myotonia Dystrophica Myotonic Dystrophy, Congenital Myotonic Myopathy, Proximal PROMM (Proximal Myotonic Myopathy) Proximal Myotonic Myopathy Steinert Disease Steinert Myotonic Dystrophy Steinert's Disease Myotonia Atrophica
Interventions
Patient-entered data
Brief 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.
Eligibility 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