Recruiting

Observational Study

Sponsor:

Myotonic Dystrophy Foundation

Code:

NCT02398786

Conditions

Myotonic Dystrophy

Congenital Myotonic Dystrophy

Myotonic Dystrophy 1

Myotonic Dystrophy 2

Dystrophia Myotonica

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Interventions

Patient-entered data

Study Details

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.

Conditions

Myotonic Dystrophy

Congenital Myotonic Dystrophy

Myotonic Dystrophy 1

Myotonic Dystrophy 2

Dystrophia Myotonica

Study ID

NCT02398786

Start date

Feb, 2013

Status verified date

Nov, 2024

Completion date

Feb, 2030

Anticipated

Primary completion date

Feb, 2030

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

3500 participants

Anticipated

Interventions and Outcome Measures

Interventions

Patient-entered data

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

Primary outcome measure

  • Patient reported outcomes [ Time Frame: 36 months ]

Central Contacts and Locations

Central contacts

Sofia Olmos, PhD

415-800-7777coordinator@myotonicregistry.org

Locations

Myotonic Dystrophy Foundation

Recruiting

Oakland, California, United States, 94612

Contacts

Sofia Olmos, PhD

415-800-7777coordinator@myotonicregistry.org

More Information

Sponsor

Myotonic Dystrophy Foundation

Last update posted

Nov 21, 2024

Last verified

Nov, 2024

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Myotonic Dystrophy Foundation on 2024-11-21.