NCT04972604Completed
CureDuchenne Link®: A Resource for Research
CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)
Source: ClinicalTrials.gov · Last updated 24 Jul 2026
Brief summary (registry, in English)
CureDuchenne link is a data hub comprised of integrated biospecimens, clinical data, and self- and/or caregiver-reported information from participants. Anyone over 4 weeks old who has been diagnosed with DMD or BMD or who is a carrier of DMD or BMD can join. Parents or legal guardians can sign up their child(ren).
- Status (registry)
- Completed
- Study type
- Observational
- Enrollment
- 240 (actual)
- First submitted
- 21 Jun 2021
- Start date
- 9 Jul 2021
- Primary completion date
- 12 Dec 2025
- Lead sponsor
- CureDuchenne
- Diseases
- Duchenne muscular dystrophy
- NCT number
- NCT04972604
What you commit to
- Study type: Observational
- Participants enrolled: 240
- From 9 Jul 2021 to the primary completion date, 12 Dec 2025
- 10 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Is a foster child or ward of the state.
- Is a prisoner.
Who the study is looking for
- Any of the following are true:
- Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis.
- Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing.
- Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations.
- Is age 4 weeks or older at the time of consent.
Age in the registry: 4 weeks to - · Sex: All · Does not accept healthy volunteers
Sites (10)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Rare Disease Research Coordinator of this site? Confirm its status | Atlanta | United States | Unknown status |
| Neurology Rare Disease Center Coordinator of this site? Confirm its status | Denton | United States | Unknown status |
| Kansas University Clinical Research Center Coordinator of this site? Confirm its status | Fairway | United States | Unknown status |
| Corewell Health Coordinator of this site? Confirm its status | Grand Rapids | United States | Unknown status |
| Penn State Health Coordinator of this site? Confirm its status | Hershey | United States | Unknown status |
| Rare Disease Research Center Coordinator of this site? Confirm its status | Hillsborough | United States | Unknown status |
| University of Iowa Coordinator of this site? Confirm its status | Iowa City | United States | Unknown status |
| Arkansas Children's Hospital Coordinator of this site? Confirm its status | Little Rock | United States | Unknown status |
| CureDuchenne Coordinator of this site? Confirm its status | Newport Beach | United States | Unknown status |
| Children's Hospital of Orange County Coordinator of this site? Confirm its status | Orange | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.