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Myotonic Dystrophy Family Registry

Who can join

All ages · All sexes

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

About the study

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.

What is being tested

• Patient-entered data (other)

Sponsor: Myotonic Dystrophy Foundation · Participants: 3,500 · Started: 2013-02

Contact the study team

• Sofia Olmos, PhD · Phone: 415-800-7777

Official record on ClinicalTrials.gov — NCT02398786

Locations in the U.S.

Conditions

• Myotonic Dystrophy

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.