Assessing seizure burden in pediatric epilepsy using an electronic medical record-based tool through a common data element approach.
Mark P FitzgeraldMichael C KaufmanShavonne L MasseySara FridingerMarisa PrelackColin EllisXilma Ortiz-GonzalezLawrence E FriedMarissa P DiGiovinenull nullSusan MelamedMarissa MalcolmBrenda BanwellDonna StephensonStephanie M WitzmanAlexander GonzalezDennis DlugosSudha Kilaru KesslerEthan M GoldbergNicholas S AbendIngo HelbigPublished in: Epilepsia (2021)
Standardized documentation of clinical data in childhood epilepsies through CDE can be implemented in routine clinical care at scale and enables assessment of disease burden, including characterization of seizure burden over time. Our data provide insights into heterogeneous patterns of seizure control in common pediatric epilepsy syndromes and will inform future initiatives focusing on patient-centered outcomes in childhood epilepsies, including the impact of telemedicine and health care disparities.