CureDuchenne Link®: A Resource for Research

NCT ID: NCT04972604

Last Updated: 2024-08-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2021-07-09

Study Completion Date

2031-07-09

Brief Summary

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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).

Detailed Description

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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.

Conditions

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Duchenne Muscular Dystrophy Becker Muscular Dystrophy

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Duchenne and Becker muscular dystrophy

Individuals with Duchenne muscular dystrophy and Becker muscular dystrophy

No interventions assigned to this group

Carriers

Carriers of Duchenne muscular dystrophy and Becker muscular dystrophy

No interventions assigned to this group

Eligibility Criteria

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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.
Minimum Eligible Age

4 Weeks

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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CureDuchenne

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Debra Miller

Role: PRINCIPAL_INVESTIGATOR

CureDuchenne

Locations

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Arkansas Children's Hospital

Little Rock, Arkansas, United States

Site Status RECRUITING

CureDuchenne

Newport Beach, California, United States

Site Status RECRUITING

Children's Hospital of Orange County

Orange, California, United States

Site Status RECRUITING

Rare Disease Research

Atlanta, Georgia, United States

Site Status RECRUITING

University of Iowa

Iowa City, Iowa, United States

Site Status RECRUITING

Kansas University Clinical Research Center

Fairway, Kansas, United States

Site Status RECRUITING

Corewell Health

Grand Rapids, Michigan, United States

Site Status RECRUITING

Rare Disease Research Center

Hillsborough, North Carolina, United States

Site Status RECRUITING

Penn State Health

Hershey, Pennsylvania, United States

Site Status RECRUITING

Neurology Rare Disease Center

Denton, Texas, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Erica Rudoff

Role: CONTACT

888-235-4655

Facility Contacts

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Aravindhan Veerapandiyan, MD

Role: primary

501-364-7373

CD Link Staff

Role: primary

888-235-4655

Linda Do

Role: primary

714-509-8945

Julia Zhu

Role: primary

Katherine Matthews

Role: primary

Cassidy Nelson

Role: primary

Abby Setterington

Role: primary

Annette Babu

Role: primary

Ellen Stoute

Role: primary

Guillermo Saldaña

Role: primary

Related Links

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https://www.cureduchenne.org/cureduchenne-link/

CureDuchenne Link Information Page

https://cureduchennelink.org/

CureDuchenne Link Registration Page

Other Identifiers

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CD-2021-01

Identifier Type: -

Identifier Source: org_study_id

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