The successes and challenges of harmonising juvenile idiopathic arthritis (JIA) datasets to create a large-scale JIA data resource
Authors' conclusion
Combining data across studies has achieved dataset sizes rarely seen in JIA, invaluable to progressing research.
Study context
- Population
- JIA patients from four UK real-world studies (CLUSTER consortium)7,013 records
- Participants
- 5,435 patients
- Comparison
- Methotrexate (MTX) vs tumour necrosis factor inhibitors (TNFi)
- MTXn = 2,899
- TNFin = 2,401
- Outcome
- Harmonised JIA datasets
Methodological detailspooling of four real-world studies, encrypted NHS numbers used to link children across studies
- Pooling of four real-world studies
- Encrypted NHS numbers used to link children across studies
Main finding
As reported in the abstract
- Records representing the same child across studies
- 2882 (1304 individuals)
- Patients in both datasets
- 1018
- Missingness, not improved through harmonisation
- 10 to 60%
Original publication
The successes and challenges of harmonising juvenile idiopathic arthritis (JIA) datasets to create a large-scale JIA data resource. Pediatr Rheumatol Online J. Published 13 July 2023. doi:10. 1186/ s12969-023-00839-2
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