An online registry for Duchenne and Becker muscular dystrophy patients
The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)
This study is creating an online registry to help people with Duchenne and Becker muscular dystrophy connect with clinical trials and find helpful information about their condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Sex | All |
| Sponsor | The Duchenne Registry Academic / other |
| Locations | 1 site (Washington D.C., District of Columbia) |
| Trial ID | NCT02069756 on ClinicalTrials.gov |
What this trial studies
The Duchenne Registry is an online platform designed for individuals diagnosed with Duchenne and Becker muscular dystrophy, as well as carrier females. It connects patients with ongoing clinical trials and research studies while providing educational resources about care and research related to these conditions. The registry also serves as a valuable resource for clinicians and researchers by offering access to de-identified datasets that can aid in advancing treatment and care. Established in 2007 by Parent Project Muscular Dystrophy, the registry is supported by various health organizations and is a member of the TREAT-NMD Neuromuscular Network.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with Duchenne or Becker muscular dystrophy, as well as manifesting and asymptomatic female carriers.
Not a fit: Patients diagnosed with other types of muscular dystrophy will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could significantly enhance patient access to clinical trials and improve the understanding of Duchenne and Becker muscular dystrophy.
How similar studies have performed: Other registries and networks have shown success in connecting patients with clinical trials and advancing research in similar conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry. Exclusion Criteria: * Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).
Where this trial is running
Washington D.C., District of Columbia
- The Duchenne Registry / PPMD — Washington D.C., District of Columbia, United States (Recruiting)
Study contacts
- Study coordinator: Ann Martin, MS, CGC
- Email: coordinator@duchenneregistry.org
- Phone: 888-520-8675
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.