Abstracts

Rationale: Research on childhood epilepsy has significantly advanced through the discovery of various genes, leading to many genetic epilepsy cohorts linked to specific genes. Establishing patient registries is now crucial for faster diagnosis, improved care, enhanced collaboration, and accelerated research and treatment development.

Methods: The electronic patient-reported outcome (ePRO) and electronic case report form (eCRF) systems are widely used in many clinical studies due to their cost-saving benefits, longitudinal data tracking capabilities, and flexibility.

Results: These systems enhance clinical and research operations through efficient data collection, improved accuracy, real-time data accessibility, increased patient engagement, and data integration.



We have established a registry for Korean pediatric patients with intractable epilepsy by integrating ePRO and eCRF through a mobile platform. This registry includes early onset genetic epilepsy, drug-resistant epilepsy, and epilepsy syndromes in early childhood. The database, which includes both clinical and molecular genetic data, is constructed in the form of an eCRF. At the time of initial registration, patients install a mobile ePRO application and simultaneously complete survey data collection. The survey information includes demographic details, current health status, and willingness to participate in clinical trials. These data are synchronized with the eCRF system using patient-specific registry numbers. Combining ePRO with eCRF enhances the depth and quality of information by directly involving patients in reporting their data.

Conclusions: This comprehensive approach not only improves data management efficiency but also maximizes the benefits of the registry through the establishment of a two-way communication system. The registry has been operational for one and a half years, and we present the initial data and ongoing performance of the registry.


Funding: Child Cancer and Rare Disease Project