Actively Recruiting
Myotonic Dystrophy Family Registry
Led by Myotonic Dystrophy Foundation · Updated on 2024-11-21
3500
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
The Myotonic Dystrophy Family Registry (MDFR) is an online database where patients with myotonic dystrophy (DM) enter their own health and demographic information. This registry aims to support researchers in developing new treatments and help identify participants for clinical trials and studies. It provides unique access for community members to explore anonymous data on the DM population and their experiences. Participants provide their information online, contributing valuable patient-entered data for future research use. The registry does not involve any active treatment but serves as a tool to support various observational studies and clinical trials focused on DM. It helps researchers better understand the community and the impact of different treatments. During participation, individuals enter data about their disease symptoms and demographics through the online platform. Researchers use this information to review patient-reported outcomes over time, such as at 36 months. The registry enhances study recruitment and helps improve knowledge about DM, guiding future research and medical care. Participation duration can vary as the registry is ongoing, with data collected and monitored remotely.
CONDITIONS
Brief Title
Myotonic Dystrophy Family Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test)
You will not qualify if you...
- Not diagnosed with myotonic dystrophy
- Unaffected family members
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (online)
Duration - Up to 36 months
Participants provide ongoing patient-entered data about their myotonic dystrophy symptoms and health over time.
Ongoing online data entry by participants
Trial Site Locations
Total: 1 location
1
Myotonic Dystrophy Foundation
Oakland, California, United States, 94612
Actively Recruiting
Research Team
S
Sofia Olmos, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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