International Seizure and SUDEP Research Repository (InSSURR) - Project Summary Sudden Unexpected Death in Epilepsy (SUDEP) is the commonest category of direct epilepsy related mortality worldwide. It is designated by NIH-NINDS as an Epilepsy Research Priority Benchmark (Area IV). Generalized convulsive seizures in patients with early onset, longstanding epilepsy, and who live alone, pose major risk. There are no specific SUDEP interventions other than general strategies to reduce seizure frequency. Research into biomarker identification and specific prevention approaches has been hindered by the lack of largescale, prospectively acquired, long term (multi-day or longer), multimodality datasets that allow comprehensive study of seizures for clues to mechanisms of death. Understanding mechanisms will allow development of specific preventive methods. Identifying biomarkers will identify those at maximum risk, who stand to gain the most from knowledge of preventive strategies. The goal of this data resource project, the International Seizure and SUDEP Research Repository (InSSURR), is to overcome the barriers posed by the lack of high-quality datasets for research. InSSURR will be the single largest resource of its kind, expanded from three foundational US and European resources, a) the previously NINDS funded Center for SUDEP Research (CSR) study; b) the French Health Ministry funded European Réseau national d’Etude des facteurs prédictifs et de la Prévention des Morts Soudaines inattendues dans les Epilepsies partielles pharmacorésistantes (REP02MSE) study; and c) the University of Texas at Houston SUDEP research database. InSSURR will ingest seizure and SUDEP data from ongoing and future studies to create the largest publicly available epilepsy mortality research data resource. We will serve the epilepsy research community by creating Epi-Arch, an integrated, expandable, metadata- mapped, data resource of >4200 persons with epilepsy (many with SUDEP) with electroencephalography, EKG, breathing, sleep and MRI data. We will develop and operationalize Epi-Port, a web-based portal for ingestion and curation of new data, and access to search and visualize the data resource using a cloud-based platform in a secure, robust, and scalable manner. We will make Epi-Tools available to the research community - a suite of data curation, data integration and signal processing tools to facilitate further offline data analysis. We will serve the SUDEP research community by: a) developing and providing access to web-based technical documentation for InSSURR, b) providing training resources, c) providing technical support, and d) supporting a user community site. In summary, by the end of the four-year project period, InSSURR will promote and enable epilepsy, seizure mortality and sleep research by creating a unique NINDS resource with an expanding database of >5000 research epilepsy datasets, and a vibrant community of end-users. In so doing, InSSURR will create a FAIR (findable, accessible, interoperable, and reusable) data ecosystem to provide an unprecedented international research data resource for SUDEP and epilepsy research.
