Leveraging the PEDSnet clinical research network and electronic health record data to enhance efficiency of trial enrollment for a rare pediatric rheumatic disease
Authors' conclusion
Results support the capacity of the PEDSnet clinical research network to facilitate identification of subjects for rare pediatric rheumatic disease studies.
Study context
- Population
- Pediatric patients with juvenile spondyloarthritis (enthesitis-related arthritis (ERA) and psoriatic arthritis (PsA)) in 8 PEDSnet centers, 2009–2023juvenile spondyloarthritis
- Participants
- 2,510 patients
- Exposure
- Electronic health record (EHR) typology query vs standard manual screening for trial enrollment
- Outcome
- Juvenile spondyloarthritis cohort identified in PEDSnet
Methodological detailsEHR-based typology, multicentre (8 PEDSnet centers)
- EHR-based typology
- Multicentre (8 PEDSnet centers)
Main finding
As reported in the abstract
- Unique patients with juvenile spondyloarthritis identified
- 2510
- Median age at 1st rheumatology visit (years)
- 12.9
- Female
- 50.4%
- Median time from 1st to last rheumatology visit (years)
- 4.2
- Code sets developed for pediatric rheumatology conditions
- 35
Observational data: associations, not effects.
Further findings
Screening effort saved by EHR query for BACK-OFF JSpA trial vs manual chart screening, one institution · 3 months
h
- Hours saved vs manual screening of all juvenile arthritis charts
- 19.5
- Hours saved vs manual screening of ERA charts
- 1.9
Original publication
Leveraging the PEDSnet clinical research network and electronic health record data to enhance efficiency of trial enrollment for a rare pediatric rheumatic disease. Pediatr Rheumatol Online J. Published 31 January 2026. doi:10.
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