An online registry for Duchenne and Becker muscular dystrophy patients
Official title: The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)
Run by The Duchenne Registry · NCT02069756 · Data updated 2026-11-12
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 |
|---|---|
| Sex | All |
| Enrollment | 10000 (estimated) |
| Sponsor | The Duchenne Registry Academic / other |
| Locations | 1 site (Washington D.C., District of Columbia) |
| Status | Recruiting |
| Started | October 2007 |
| Main results expected | October 2027 |
| Study ends | October 2047 |
| Registry record updated | May 8, 2026 |
| Trial ID | NCT02069756 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals diagnosed with Duchenne or Becker muscular dystrophy, as well as manifesting and asymptomatic female carriers.
✕Probably not a fit
Patients diagnosed with other types of muscular dystrophy will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
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.
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 gone: Other registries and networks have shown success in connecting patients with clinical trials and advancing research in similar conditions.
Who can join: the full rules
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 it's running
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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
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Duchenne/Becker Muscular Dystrophy EHR Data Linkage
This study tests whether consented patients’ electronic health records can be linked with the Duchenne Registry data to create a richer view of Duchenne and Becker muscular dystrophy care.
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Duchenne/Becker Muscular Dystrophy Registry for patients and carriers
This registry tests whether patients with Duchenne or Becker muscular dystrophy, or symptomatic female carriers, can be enrolled and followed across specialist centers to improve data sharing and care.
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Developing new biomarkers for muscular dystrophies
This study is trying to find easier and less painful ways to measure how serious muscular dystrophies are by looking at urine and blood samples and using simple tests, to help improve diagnosis and treatment for people with these conditions.
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Using MRI and biomarkers to monitor muscular dystrophy progression
This study is testing if MRI and other tests can help track how Duchenne and Becker muscular dystrophies change over time in boys and men, and see how these changes relate to their daily activities and treatments.
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VM100: a nutritional supplement to see if it improves quality of life for boys with Duchenne
This Phase 2 study tests VM100, a nutritional drink, in boys aged 8 and up with Duchenne muscular dystrophy to see if it can improve quality of life and reduce fatigue.
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KER-065 for Duchenne Muscular Dystrophy: safety and potential benefit in boys and men
This study tests whether KER-065 is safe and can help with symptoms in males with Duchenne muscular dystrophy, including both ambulatory and nonambulatory participants who are on standard care.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.