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RecruitingNCT02398786

Myotonic Dystrophy Family Registry

Sponsor

Myotonic Dystrophy Foundation

Enrollment

3,500 participants

Start Date

Feb 1, 2013

Study Type

OBSERVATIONAL

Conditions

Myotonic Dystrophy Myotonic Dystrophy 1 Dystrophia Myotonica Congenital Myotonic Dystrophy Myotonic Dystrophy, Congenital Steinert Disease Myotonic Dystrophy 2 Dystrophia Myotonica 1 Dystrophia Myotonica 2 Myotonia Dystrophica Myotonic Myopathy, Proximal PROMM (Proximal Myotonic Myopathy)Proximal Myotonic Myopathy Steinert Myotonic Dystrophy Steinert's Disease Myotonia Atrophica

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

Inclusion Criteria1

Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test)

Exclusion Criteria1

Not diagnosed with DM, unaffected family members

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Interventions

OTHERPatient-entered data

This registry provides patient-entered data for future clinical trial and study use.

Locations(1)

Myotonic Dystrophy Foundation

Oakland, California, United States

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NCT02398786

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