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NCT07609394 · ClinicalTrials.gov registry record
Duchenne Electronic Health Record Study
A clinical trial, sponsored by The Duchenne Registry.
- Recruiting
- Registry status
- 2,500
- Enrollment target
NCT07609394: Recruiting study, sponsored by The Duchenne Registry.
NCT07609394 is a clinical trial that is actively recruiting participants, run by The Duchenne Registry. The registered enrollment target is 2,500 participants. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT07609394 is actively recruiting participants, sponsored by The Duchenne Registry.
- RECRUITING
- Registry status
- 2,500 participants
- Enrollment target
Study Summary
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.
Primary Outcome
Characterize progressive muscle weakness in dystrophinopathy patients over time by measuring 1) age at start of corticosteroids (age at first prescription); 2) corticosteroid use including name, dose, regimen; and 3) dependence on wheelchair or age at fulltime wheelchair use (date of wheelchair/DME order).
Interventions
- OTHER Observational study with patients who may be treated with various disease-modifying therapies
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 2,500 participants |
| Start Date | 2022-12-01 |
| Est. Completion | 2072-12 |
What NCT07609394 shows while recruiting
NCT07609394 is an observational study that tracks outcomes without assigning an intervention. Its 2,500 participants enrollment target places it among the larger protocols in the corpus.
The record links to 0 conditions, and to 1 intervention - of which Observational study with patients who may be treated with various disease-modifying therapies is the first listed.
NCT07609394 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT07609394 about?
NCT07609394 is a clinical study titled "Duchenne Electronic Health Record Study". 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 pu...
What is the current status of trial NCT07609394?
This trial is currently recruiting. The enrollment target is 2,500 participants. The study started on 2022-12-01. Estimated completion is 2072-12.
What interventions are being tested in trial NCT07609394?
The interventions under investigation include: Observational study with patients who may be treated with various disease-modifying therapies (OTHER).
Who is sponsoring clinical trial NCT07609394?
This trial is sponsored by The Duchenne Registry, which has 2 total clinical trials registered on ClinicalTrials.gov.
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