RecruitingNCT04972604

CureDuchenne Link®: A Resource for Research

CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)


Sponsor

CureDuchenne

Enrollment

5,000 participants

Start Date

Jul 9, 2021

Study Type

OBSERVATIONAL

Conditions

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

Min Age: 4 Weeks

Inclusion Criteria5

  • 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.

Exclusion Criteria2

  • Is a foster child or ward of the state.
  • Is a prisoner.

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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

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NCT04972604


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