CureDuchenne Link®: A Resource for Research

Last updated: August 19, 2024
Sponsor: CureDuchenne
Overall Status: Active - Recruiting

Phase

N/A

Condition

Muscular Dystrophy

Treatment

N/A

Clinical Study ID

NCT04972604
CD-2021-01
  • Ages > 4
  • All Genders

Study 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 Criteria

Inclusion

Inclusion Criteria:

  1. Any of the following are true:

  2. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, musclebiopsy, or clinical diagnosis.

  3. Currently has a confirmed diagnosis of carrier status for DMD/BMD based ongenetic testing.

  4. Parent/guardian (for minor participants) or participant gives informed consentand/or assent as required by local regulations.

  5. Is age 4 weeks or older at the time of consent.

Exclusion

Exclusion Criteria:

  1. Is a foster child or ward of the state.

  2. Is a prisoner.

Study Design

Total Participants: 5000
Study Start date:
July 09, 2021
Estimated Completion Date:
July 09, 2031

Study 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.

Connect with a study center

  • Arkansas Children's Hospital

    Little Rock, Arkansas 72202
    United States

    Active - Recruiting

  • CureDuchenne

    Newport Beach, California 92660
    United States

    Active - Recruiting

  • Children's Hospital of Orange County

    Orange, California 92868
    United States

    Active - Recruiting

  • Rare Disease Research

    Atlanta, Georgia 30329
    United States

    Active - Recruiting

  • University of Iowa

    Iowa City, Iowa 52242
    United States

    Active - Recruiting

  • Kansas University Clinical Research Center

    Fairway, Kansas 66205
    United States

    Active - Recruiting

  • Corewell Health

    Grand Rapids, Michigan 49503
    United States

    Active - Recruiting

  • Rare Disease Research Center

    Hillsborough, North Carolina 27278
    United States

    Active - Recruiting

  • Penn State Health

    Hershey, Pennsylvania 17033
    United States

    Active - Recruiting

  • Neurology Rare Disease Center

    Denton, Texas 76208
    United States

    Active - Recruiting

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