CureDuchenne Link : A Resource for Research

  • STATUS
    Recruiting
  • End date
    Jul 9, 2031
  • participants needed
    5000
  • sponsor
    CureDuchenne
Updated on 31 July 2021
becker muscular dystrophy

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).

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.

Details
Condition Muscular Dystrophy, DUCHENNE MUSCULAR DYSTROPHY, becker muscular dystrophy
Clinical Study IdentifierNCT04972604
SponsorCureDuchenne
Last Modified on31 July 2021

Eligibility

Yes No Not Sure

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
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How to participate?

Step 1 Connect with a site
What happens next?
  • You can expect the study team to contact you via email or phone in the next few days.
  • Sign up as volunteer to help accelerate the development of new treatments and to get notified about similar trials.

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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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