Collects health record data from people with Duchenne and Becker muscular dystrophy
Gathers electronic health record data from people with Duchenne or Becker muscular dystrophy.
Plain-language title generated from the registry record
Registry title: Duchenne Electronic Health Record Study
Key facts
- Where
- Aurora, Dallas, Durham, Iowa City, Little Rock, New Haven, Sacramento, Salt Lake City, Seattle, and Washington D.C., United StatesSee the 11 sites
Where in United States
- Children's Hospital ColoradoAurora, United StatesTaking people
- UT Southwestern Medical CenterDallas, United StatesTaking people
- Duke University Medical CenterDurham, United StatesTaking people
- University of Iowa Health CareIowa City, United StatesTaking people
- Arkansas Children's HospitalLittle Rock, United StatesTaking people
- Yale Children's HospitalNew Haven, United StatesTaking people
- UC Davis HealthSacramento, United StatesTaking people
- Primary Children's HospitalSalt Lake City, United StatesTaking people
- University Of Utah HealthSalt Lake City, United StatesTaking people
- Seattle Children's HospitalSeattle, United StatesTaking people
- Children's National Medical CenterWashington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- The Duchenne Registry
- Trial code
- NCT07609394
- Record updated
- 2 November 2026
- Original description
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.Read full original descriptionShow less
Duchenne Outcomes Research Interchange Data Enrichment Through EHR Extraction
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 core clinical data elements going back ten years (as available) from the date of consent; going back one year for retrospective clinical notes from the date of consent; and prospectively collecting both core clinical data elements and clinical notes. Information collected will align with the FHIR U.S. core data elements, also known as the Common Clinical Data Set.
PPMD partnered with Prometheus Research (an IQVIA company), an industry leader in health data informatics, to launch both the EHR Study and the Interchange. All data is stored securely and in accordance with strict industry standards and patient privacy laws. Participation in the EHR data extraction is voluntary, and a patient can withdraw consent at any time.
Inclusion: 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: 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.