Trials / Recruiting
RecruitingNCT02398786
Myotonic Dystrophy Family Registry
- Status
- Recruiting
- Phase
- —
- Study type
- Observational
- Enrollment
- 3,500 (estimated)
- Sponsor
- Myotonic Dystrophy Foundation · Academic / Other
- Sex
- All
- Age
- —
- Healthy volunteers
- Not accepted
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.
Detailed description
The Myotonic Dystrophy Family Registry (MDFR) is an online, patient-entered database that collects information on myotonic dystrophy (DM) such as disease symptoms and demographic information to aid researchers in developing new, effective treatments and help identify participants for research studies and clinical trials. 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
- Myotonic Dystrophy
- Congenital Myotonic Dystrophy
- Myotonic Dystrophy 1
- Myotonic Dystrophy 2
- Dystrophia Myotonica
- Dystrophia Myotonica 1
- Dystrophia Myotonica 2
- Myotonia Dystrophica
- Myotonic Dystrophy, Congenital
- Myotonic Myopathy, Proximal
- PROMM (Proximal Myotonic Myopathy)
- Proximal Myotonic Myopathy
- Steinert Disease
- Steinert Myotonic Dystrophy
- Steinert's Disease
- Myotonia Atrophica
Interventions
| Type | Name | Description |
|---|---|---|
| OTHER | Patient-entered data | This registry provides patient-entered data for future clinical trial and study use. |
Timeline
- Start date
- 2013-02-01
- Primary completion
- 2030-02-01
- Completion
- 2030-02-01
- First posted
- 2015-03-26
- Last updated
- 2024-11-21
Locations
1 site across 1 country: United States
Source: ClinicalTrials.gov record NCT02398786. Inclusion in this directory is not an endorsement.