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Completed

NCT Number: NCT04972604

CureDuchenne Link®: A Resource for Research

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).

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Key information

Conditions

Duchenne Muscular Dystrophy Becker Muscular Dystrophy Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Genetic Diseases, X-Linked Muscular Diseases Muscular Disorders, Atrophic Muscular Dystrophies Muscular Dystrophy, Duchenne Musculoskeletal Diseases Nervous System Diseases Neuromuscular Diseases

Age range

4 week and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Arkansas Children's Hospital, Little Rock, Arkansas, United States

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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 criteria

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

Treatment and study plan

Primary outcomes

  1. Diagnosis

    Time frame: Upon study entry

    There is no intervention in this project. Participants will provide documentation to support their diagnosis of Duchenne muscular dystrophy, Becker muscular dystrophy, or a carrier of these mutations

  2. Genetic Mutation

    Time frame: Upon study entry or when genetic testing results are available

    Participants will be asked to provide genetic testing reports confirming their diagnosis, where available, which will be reviewed by a central genetic counselor.

Secondary outcomes

  1. Functional Status

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Self reported data (questionnaire on ambulation and mobility) will be captured

  2. North Star Ambulation Assessment (NSAA) Score

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Clinically reported NSAA scores will be captured

  3. 6 Minute Walk Test (6MWT) Score

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Clinically reported 6MWT scores will be captured

  4. Corticosteroid Status

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Self reported and clinically reported corticosteroid status (past and present) will be captured

  5. Cardiac Status

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Self reported and clinically reported cardiac status (past and present) will be captured

  6. Respiratory Status

    Time frame: Upon study entry and every 6-12 months thereafter for up to ten (10) years

    Self reported and clinically reported respiratory status (past and present) will be captured

Sponsors and collaborators

Lead sponsor

CureDuchenne

Other

Registry information

Official study title

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

Acronym: CDLink

Important dates

Study start
2021
Primary completion
2025
Study completion
2025
First posted
Jul 22, 2021
Registry last updated
Jul 24, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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