Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.
RECRUITING
3500 participants
OBSERVATIONAL
2013-02-28
2030-02-28
Brief Summary
Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.
Related Clinical Trials
Explore similar clinical trials based on study characteristics and research focus.
Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry
NCT00082108
The Duchenne Registry
NCT02069756
Multicenter Observational Study of Myotonic Dystrophy Type 1
NCT02308657
The United Kingdom National Registry for Myotonic Dystrophy
NCT04003363
Assessing Clinical Endpoints and Biomarkers in Myotonic Dystrophy Type-1 and Type 2 (ASCEND-DM)
NCT03867435
Detailed Description
Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.
The Registry supports trials and studies, making it easier for researchers to explore data and identify possible trial and study participants. It is the first DM registry that gives community members the opportunity to explore anonymous Registry data, to see what the DM community looks like and what others with DM experience. It also provides information on the community of people living with DM, giving researchers and other medical professionals the opportunity to improve how they treat those affected with DM and learn more about how and why certain treatments work and don't work.
Conditions
See the medical conditions and disease areas that this research is targeting or investigating.
Study Design
Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.
COHORT
PROSPECTIVE
Interventions
Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.
Patient-entered data
This registry provides patient-entered data for future clinical trial and study use.
Eligibility Criteria
Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.
Inclusion Criteria
Exclusion Criteria
ALL
No
Sponsors
Meet the organizations funding or collaborating on the study and learn about their roles.
Myotonic Dystrophy Foundation
OTHER
Responsible Party
Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.
Principal Investigators
Learn about the lead researchers overseeing the trial and their institutional affiliations.
Tanya Stevenson, EdD, MPH
Role: STUDY_CHAIR
Myotonic Dystrophy Foundation
Locations
Explore where the study is taking place and check the recruitment status at each participating site.
Myotonic Dystrophy Foundation
Oakland, California, United States
Countries
Review the countries where the study has at least one active or historical site.
Central Contacts
Reach out to these primary contacts for questions about participation or study logistics.
Facility Contacts
Find local site contact details for specific facilities participating in the trial.
Related Links
Access external resources that provide additional context or updates about the study.
Myotonic Dystrophy Family Registry (MDFR) Web portal.
Other Identifiers
Review additional registry numbers or institutional identifiers associated with this trial.
MDF001
Identifier Type: -
Identifier Source: org_study_id
More Related Trials
Additional clinical trials that may be relevant based on similarity analysis.