Online registry for myotonic dystrophy patients
Myotonic Dystrophy Family Registry
This study is creating an online registry for people with myotonic dystrophy to share their experiences and help researchers find better treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3500 (estimated) |
| Sex | All |
| Sponsor | Myotonic Dystrophy Foundation Academic / other |
| Locations | 1 site (Oakland, California) |
| Trial ID | NCT02398786 on ClinicalTrials.gov |
What this trial studies
The Myotonic Dystrophy Family Registry (MDFR) is an online platform where patients with myotonic dystrophy can enter their information, including symptoms and demographics. This registry aims to assist researchers in developing new treatments and identifying participants for clinical trials. By allowing community members to explore anonymous data, it enhances understanding of the myotonic dystrophy community and supports the improvement of treatment strategies. The MDFR is the first of its kind focused on myotonic dystrophy, providing valuable insights into the condition.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with congenital, juvenile-onset, or adult-onset myotonic dystrophy.
Not a fit: Patients who are not diagnosed with myotonic dystrophy or unaffected family members will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to more effective treatments and better understanding of myotonic dystrophy.
How similar studies have performed: Other patient registries have shown success in facilitating research and improving treatment outcomes for various conditions, indicating a positive precedent for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosed with congenital, juvenile-onset or adult onset DM1 or DM2 (confirmed by clinical exam or genetic test) Exclusion Criteria: * Not diagnosed with DM, unaffected family members
Where this trial is running
Oakland, California
- Myotonic Dystrophy Foundation — Oakland, California, United States (Recruiting)
Study contacts
- Study coordinator: Sofia Olmos, PhD
- Email: coordinator@myotonicregistry.org
- Phone: 415-800-7777
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.