Duchenne Outcomes Research Interchange Data Enrichment Through EHR Extraction
Sponsor: The Duchenne Registry
Trial Details
| Condition | Duchenne Muscular Dystrophy (DMD), Becker Muscular Dystrophy, Dystrophinopathy, Dystrophinopathy Symptomatic Female Carrier |
| Intervention | Observational study with patients who may be treated with various disease-modifying therapies |
| Status | Recruiting |
| Participants | 2,500 |
| Est. Completion | 1 Dec 2035 |
| Last Updated | 27 May 2026 |
Primary Outcome
Progressive Muscle Weakness; Cardiac Function; Pulmonary Function; Bone Health
Eligibility Criteria
Inclusion Criteria
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.
Trial Sites
Countries
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