← Back to Clinical Trials
Recruiting NCT02398786

NCT02398786 Myotonic Dystrophy Family Registry

◆ AI Clinical Summary
Plain-language summary for patients
Clinical Trial Summary
NCT ID NCT02398786
Status Recruiting
Phase
Sponsor Myotonic Dystrophy Foundation
Condition Myotonic Dystrophy
Study Type OBSERVATIONAL
Enrollment 3,500 participants
Start Date 2013-02
Primary Completion 2030-02

Eligibility & Interventions

Sex All sexes
Min Age N/A
Max Age N/A
Study Type OBSERVATIONAL
Interventions
Patient-entered data

Eligibility Fast-Check

Enter your details for a quick preliminary check. This does not replace medical advice.

What to Expect as a Participant

This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.

This trial targets 3,500 participants in total. It began in 2013-02 with a primary completion date of 2030-02.

⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.

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

Contact & Investigator

Central Contact

Sofia Olmos, PhD

✉ coordinator@myotonicregistry.org

📞 415-800-7777

Principal Investigator

Tanya Stevenson, EdD, MPH

STUDY CHAIR

Myotonic Dystrophy Foundation

Frequently Asked Questions

Who can join the NCT02398786 clinical trial?

This trial is open to participants of all sexes, studying Myotonic Dystrophy. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.

Is NCT02398786 currently recruiting?

Yes, NCT02398786 is actively recruiting participants. Contact the research team at coordinator@myotonicregistry.org for enrollment information.

Where is the NCT02398786 trial being conducted?

This trial is being conducted at Oakland, United States.

Who is sponsoring the NCT02398786 clinical trial?

NCT02398786 is sponsored by Myotonic Dystrophy Foundation. The principal investigator is Tanya Stevenson, EdD, MPH at Myotonic Dystrophy Foundation. The trial plans to enroll 3,500 participants.

Related Trials

ClinicalMetric — Independent clinical trial intelligence platform. Not affiliated with NIH, ClinicalTrials.gov, the U.S. FDA, or any pharmaceutical company, hospital, or clinical research organization. Trial data is sourced from ClinicalTrials.gov for informational purposes only and does not constitute medical advice. Do not make any treatment, enrollment, or health decisions based solely on information found here — always consult a qualified healthcare professional. Full Disclaimer  ·  Last Reviewed: April 2026  ·  Data Methodology