CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)
Status: Recruiting
Location: See all (10) locations...
Study Type: Observational
SUMMARY
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).
Eligibility
Participation Requirements
Sex: All
Minimum Age: 28 days
Healthy Volunteers: f
View:
• 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.
Locations
United States
Arkansas
Arkansas Children's Hospital
RECRUITING
Little Rock
California
CureDuchenne
RECRUITING
Newport Beach
Children's Hospital of Orange County
RECRUITING
Orange
Georgia
Rare Disease Research
RECRUITING
Atlanta
Iowa
University of Iowa
RECRUITING
Iowa City
Kansas
Kansas University Clinical Research Center
RECRUITING
Fairway
Michigan
Corewell Health
RECRUITING
Grand Rapids
North Carolina
Rare Disease Research Center
RECRUITING
Hillsborough
Pennsylvania
Penn State Health
RECRUITING
Hershey
Texas
Neurology Rare Disease Center
RECRUITING
Denton
Contact Information
Primary
Erica Rudoff
support@cureduchennelink.org
888-235-4655
Time Frame
Start Date: 2021-07-09
Estimated Completion Date: 2031-07-09
Participants
Target number of participants: 5000
Treatments
Duchenne and Becker muscular dystrophy
Individuals with Duchenne muscular dystrophy and Becker muscular dystrophy
Carriers
Carriers of Duchenne muscular dystrophy and Becker muscular dystrophy
Authors
Related Therapeutic Areas
Sponsors
Leads: CureDuchenne