Abstract
Objective This study aims to compare data availability and analytic results for patients using matched data items from a dedicated disease registry versus data extracted directly from an electronic patient record (EPR) system and a trusted research environment (TRE). Methods Data from patients enrolled in the National JDM Cohort and Biomarker Study (JDCBS) was compared with routine EPR data from the same patients attending a specialist children’s hospital between 2019-2021. Data from both sources were extracted, de-identified, and analysed within a trusted research environment adhering to NHS security standards. Descriptive statistics, visualizations, and statistical comparisons were performed. Results Of the 688 registry patients in total, 270 attended one specialist hospital with EPR data available. The EPR system yielded 328,527 data points on these patients compared to 40,673 from the registry, including 2-10 fold more data items across data categories. Diagnoses were more numerous in the EPR data, while registry data captured more comprehensive medication records. Laboratory test results were 10 times more frequent in EPR data, including a broader range of test types. Despite higher data volume in EPR, the clinical significance of the additional data points remains uncertain. Conclusion Routine EPR data can effectively replicate much disease registry data with a larger volume of data points, potentially offering additional analytical possibilities. However, specific targeted registry data collection remains valuable for certain data elements. A hybrid approach, utilizing both routine EPR data and focused registry collection, could optimise healthcare research by reducing costs and avoiding duplication.
Published Version
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