Myotonic Dystrophy Family Registry
This is an online registry called the Myotonic Dystrophy Family Registry (MDFR). It's not testing a new medicine, but rather collecting information from people with Myotonic Dystrophy (DM) to help researchers understand the condition better and find participants for future studies. You can join if you have a confirmed diagnosis of congenital, juvenile-onset, or adult-onset Myotonic Dystrophy type 1 (DM1) or type 2 (DM2). The goal is to gather patient-reported information over 36 months to help develop more effective treatments and improve care for people with DM.
- Study design
- This is an observational study, meaning it collects information without testing a specific treatment. It aims to include 3500 participants.
- What's involved
- You would enter your health information into an online database.
- Compensation
- Not stated in the trial record.
- Follow-up
- Patient-reported outcomes will be measured for 36 months.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
Myotonic Dystrophy Family Registry
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Tanya Stevenson, EdD, MPH · STUDY_CHAIR · Myotonic Dystrophy Foundation
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
Do you actually qualify for this trial?
Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.
Inclusion
Exclusion
What this trial measures
- Patient reported outcomes36 months
Number of patients reporting specific symptoms and symptom severity, as well as impacts to quality of life and overall burden of disease in order to inform clinical trial development, understanding of disease for academic, industry and federal agency stakeholders and overall policy decisions. Results will be analyzed in comparison to other registry data and surveys to characterize this disease population cohort and to further define the population.