MEDCIS: Multi-Modality Epilepsy Data Capture and Integration System

Sudden Unexpected Death in Epilepsy (SUDEP) is the leading mode of epilepsy-related death and is most common in patients with intractable, frequent, and continuing seizures. A statistically significant cohort of patients for SUDEP study requires meticulous, prospective follow up of a large population that is at an elevated risk, best represented by the Epilepsy Monitoring Unit (EMU) patient population. Multiple EMUs need to collaborate, share data for building a larger cohort of potential SUDEP patient using a state-of-the-art informatics infrastructure. To address the challenges of data integration and data access from multiple EMUs, we developed the Multi-Modality Epilepsy Data Capture and Integration System (MEDCIS) that combines retrospective clinical free text processing using NLP, prospective structured data capture using an ontology-driven interface, interfaces for cohort search and signal visualization, all in a single integrated environment. A dedicated Epilepsy and Seizure Ontology (EpSO) has been used to streamline the user interfaces, enhance its usability, and enable mappings across distributed databases so that federated queries can be executed. MEDCIS contained 936 patient data sets from the EMUs of University Hospitals Case Medical Center (UH CMC) in Cleveland and Northwestern Memorial Hospital (NMH) in Chicago. Patients from UH CMC and NMH were stored in different databases and then federated through MEDCIS using EpSO and our mapping module. More than 77GB of multi-modal signal data were processed using the Cloudwave pipeline and made available for rendering through the web-interface. About 74% of the 40 open clinical questions of interest were answerable accurately using the EpSO-driven VISual AGregagator and Explorer (VISAGE) interface. Questions not directly answerable were either due to their inherent computational complexity, the unavailability of primary information, or the scope of concept that has been formulated in the existing EpSO terminology system.