CureDuchenne Link®: A Resource for Research (CDLink)

CureDuchenne

Status

Enrolling

Conditions

Becker Muscular Dystrophy

Duchenne Muscular Dystrophy

Study type

Observational

Funder types

Other

Identifiers

NCT04972604

CD-2021-01

Details and patient eligibility

About

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).

Full 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.

Enrollment

5,000 estimated patients

Sex

All

Ages

4+ weeks old

Volunteers

No Healthy Volunteers

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.
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.