CureDuchenne Link®: A Resource for Research

Launched by CUREDUCHENNE · Jul 12, 2021

Keywords

ClinConnect Summary

The CureDuchenne Link® trial is focused on gathering important information about Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD). This study is creating a central hub of data that includes biological samples, clinical information, and personal reports from patients and their caregivers. It aims to help researchers better understand these conditions and improve future treatments.

Anyone who is at least 4 weeks old and has been diagnosed with DMD or BMD, or is a carrier of these conditions, can join the study. Parents or legal guardians can enroll their children in the trial. Participants will provide consent, and they can expect to share their health information and possibly provide biological samples to help researchers. The trial is currently recruiting participants of all ages and genders, but it does not include foster children or prisoners. This study is a valuable opportunity to contribute to ongoing research and improve care for those affected by DMD and BMD.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• 1. Any of the following are true:
• • 1. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis.
• • 2. Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing.
• • 2. Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations.
• • 3. Is age 4 weeks or older at the time of consent.
• Exclusion Criteria:
• • 1. Is a foster child or ward of the state.
• • 2. Is a prisoner.