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CureDuchenne Link®: A Resource for Research
Sponsor: CureDuchenne
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).
Official title: CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)
Key Details
Gender
All
Age Range
4 Weeks - Any
Study Type
OBSERVATIONAL
Enrollment
5000
Start Date
2021-07-09
Completion Date
2031-07-09
Last Updated
2024-08-20
Healthy Volunteers
No
Locations (10)
Arkansas Children's Hospital
Little Rock, Arkansas, United States
CureDuchenne
Newport Beach, California, United States
Children's Hospital of Orange County
Orange, California, United States
Rare Disease Research
Atlanta, Georgia, United States
University of Iowa
Iowa City, Iowa, United States
Kansas University Clinical Research Center
Fairway, Kansas, United States
Corewell Health
Grand Rapids, Michigan, United States
Rare Disease Research Center
Hillsborough, North Carolina, United States
Penn State Health
Hershey, Pennsylvania, United States
Neurology Rare Disease Center
Denton, Texas, United States