Myotonic Dystrophy Family Registry
Public ClinicalTrials.gov record NCT02398786. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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.
Study identification
- NCT ID
- NCT02398786
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 3,500 participants
Conditions and interventions
Conditions
- Congenital Myotonic Dystrophy
- Dystrophia Myotonica
- Dystrophia Myotonica 1
- Dystrophia Myotonica 2
- Myotonia Atrophica
- Myotonia Dystrophica
- Myotonic Dystrophy
- Myotonic Dystrophy 1
- Myotonic Dystrophy 2
- Myotonic Dystrophy, Congenital
- Myotonic Myopathy, Proximal
- PROMM (Proximal Myotonic Myopathy)
- Proximal Myotonic Myopathy
- Steinert Disease
- Steinert Myotonic Dystrophy
- Steinert's Disease
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Jan 31, 2013
- Primary completion
- Jan 31, 2030
- Completion
- Jan 31, 2030
- Last update posted
- Nov 20, 2024
2013 – 2030
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Myotonic Dystrophy Foundation | Oakland | California | 94612 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
Recently updated Congenital Myotonic Dystrophy trials
Other public records listing Congenital Myotonic Dystrophy. Sorted by last update posted; newest first. Not a recommendation.
- NCT05224778: DMCRN-02-001: Assessing Pediatric Endpoints in DM1 Recruiting
- NCT00082108: Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry Recruiting
- NCT06747884: Trial Readiness and Endpoint Assessment in Pediatric Myotonic Dystrophy Extension Recruiting
- NCT05004129: Safety and Efficacy of Tideglusib in Congenital or Childhood Onset Myotonic Dystrophy Recruiting
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT02398786, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Nov 20, 2024 · Synced Jul 26, 2026
Related: full search, browse by condition, browse by drug or therapy, browse by sponsor, browse by U.S. city.
Open the official record
The complete protocol, eligibility criteria, and contact information for NCT02398786 live on ClinicalTrials.gov.