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Duchenne Electronic Health Record Study

Recruitingn/aAges any - anyAllThe Duchenne Registry
NCT07609394 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

This study aims to collect retrospective and prospective, long-term data of patients with dystrophinopathy (including Duchenne, Becker, and female carriers) through electronic transfer. At select clinics across the United States, electronic health record (EHR) data from consented patients will be pushed into PPMD's Duchenne Outcomes Research Interchange (the Interchange), where the EHR data can be combined with patient-reported data from The Duchenne Registry. By combining this data in a central hub, we will gain a more complete picture of Duchenne and Becker muscular dystrophy, allowing researchers and clinicians to develop treatments faster and to improve and refine the standards of care for Duchenne and Becker. The ultimate goal is to optimize function, quality of life, and survival of Duchenne and Becker patients. EHR data collected will be fully identifiable retrospective data for

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📋 Eligibility rules (as published)
Inclusion Criteria: * Duchenne or Becker muscular dystrophy or female carrier * Must be a patient at an institution that has an established EHR integration set up with PPMD's Interchange * Must provide consent to have their EHR data pushed to the Interchange and linked to existing Registry data, if applicable Exclusion Criteria: * Individuals with other forms of muscular dystrophy * Individuals who do not provide consent Individuals with Duchenne/Becker who have severe mobility/strength issues need to provide consent and participate with assistance from a caregiver. Adults with communication impairments and/or intellectual disabilities (considered the "decisionally impaired" group for purposes of this study) will be able to consent with the assistance of the adults who are designated Legally Authorized Representative (LAR). Without assistance, this group will be excluded from participation because the consent process.
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What it tests

  • Observational study with patients who may be treated with various disease-modifying therapies
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Where

10 sites
Arkansas Children's Hospital
Little Rock, United States
UC Davis Health
Sacramento, United States
Children's Hospital Colorado
Aurora, United States
Yale Children's Hospital
New Haven, United States
Children's National Medical Center
Washington D.C., United States
University of Iowa Health Care
Iowa City, United States
Duke University Medical Center
Durham, United States
UT Southwestern Medical Center
Dallas, United States

…and 2 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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