CureDuchenne Link®: A Resource for Research
Purpose
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).
Conditions
- Duchenne Muscular Dystrophy
- Becker Muscular Dystrophy
Eligibility
- Eligible Ages
- Over 4 Weeks
- Eligible Genders
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- Any of the following are true: 1. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis. 2. Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing. 2. Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations. 3. Is age 4 weeks or older at the time of consent.
Exclusion Criteria
- Is a foster child or ward of the state. 2. Is a prisoner.
Study Design
- Phase
- Study Type
- Observational [Patient Registry]
- Observational Model
- Cohort
- Time Perspective
- Prospective
Arm Groups
| Arm | Description | Assigned Intervention |
|---|---|---|
| Duchenne and Becker muscular dystrophy | Individuals with Duchenne muscular dystrophy and Becker muscular dystrophy | |
| Carriers | Carriers of Duchenne muscular dystrophy and Becker muscular dystrophy |
Recruiting Locations
Fairway, Kansas 66205
More Details
- Status
- Recruiting
- Sponsor
- CureDuchenne
Detailed Description
Individuals can participate through the CureDuchenne Link™ application (accessible via mobile device or web interface) and receive communications about research opportunities and community programs. Participation may be done using virtual methods, at a project site, and/or at community events nationwide. All collected information will be stored in a secure, HIPAA-compliant data warehouse for approved researchers to use for studies relevant to DMD, BMD and other neuromuscular disorders. Combining health and outcomes data with biospecimens provides an impactful solution and novel resource for researchers, allowing for effective translational research.