Study Results
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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RECRUITING
5000 participants
OBSERVATIONAL
2021-07-09
2031-07-09
Brief Summary
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Detailed Description
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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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Study Design
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COHORT
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. 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
2. Is a prisoner.
4 Weeks
ALL
No
Sponsors
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CureDuchenne
OTHER
Responsible Party
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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
CureDuchenne
Newport Beach, California, United States
Children's Hospital of Orange County
Orange, California, United States
Rare Disease Research
Atlanta, Georgia, United States
University of Iowa
Iowa City, Iowa, United States
Kansas University Clinical Research Center
Fairway, Kansas, United States
Corewell Health
Grand Rapids, Michigan, United States
Rare Disease Research Center
Hillsborough, North Carolina, United States
Penn State Health
Hershey, Pennsylvania, United States
Neurology Rare Disease Center
Denton, Texas, United States
Countries
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Central Contacts
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Facility Contacts
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Related Links
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CureDuchenne Link Information Page
CureDuchenne Link Registration Page
Other Identifiers
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CD-2021-01
Identifier Type: -
Identifier Source: org_study_id
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