The Center for SUDEP Research (CSR), Informatics and Data Analytics Core (IDAC)

A. SPECIFIC AIMS. The overall goal of SUTRA (SUDEP Translational Research Alliance) Center Without Walls is to reduce SUDEP mortality rate by discovering the biological mechanisms that cause SUDEP and developing an intervention or prevention measure. Progress towards this overall goal will rest on SUTRA’s scientific goal: a better understanding of the brainstem mechanisms responsible for SUDEP and elucidate the role of cortical influences thereon using a data-driven, systems-biology-based approach. This understanding requires a strategy that shares research resources and infrastructure to make good and efficient use of a spectrum of prospectively collected information encompassing clinical, electrophysiological, biochemical, genetic, and neuropathological domains. In our NINDS-funded center-planning award, Prevention and Risk Identification of SUDEP Mortality (PRISM; 1P20-NS076965), a team of world-class epileptologists, computer scientists, biomedical informaticians and data analytics experts has developed an informatics infrastructure for sharing research data, called the Multi- Modality Epilepsy Data Capture and Integration System (MEDCIS). MEDCIS includes 300 phenotypic electroclinical epilepsy, sleep and cardio-respiratory datasets with almost daily additional enrollment; a SUDEP neuropathology resource of phenotypic data on 4 fresh frozen and 135 formalin fixed SUDEP brains; and a SUDEP genetics resource of 203 SUDEP patients. SUTRA will expand and broaden the sharing and utilization of these PRISM resources among 5 centers across 7 institutions, with full access to these materials. Alliances with stakeholder organizations including Dup15q, the North American SUDEP Registry, Courtagen, GW Pharma, and CURE is expected to continuously boost materials and data collection. A critical aspect of SUTRA is the process and infrastructure facilitating the sharing of clinical and research data across centers. The main goal of this Informatics and Data Analytics Core (IDAC) is to build on the paradigm-changing progress already achieved through PRISM’s MEDICS infrastructure and provide integrated service and support for data-driven and evidence-based research on SUDEP.