Abstracts

Rationale: Translational research of sudden unexplained death in epilepsy is critically dependent on the availability of quality postmortem tissue from patients that succumbed to this tragic complication of epilepsy. SUDEP registry and tissue banking are the imminent principal goals of the STOP SUDEP Program while the larger purpose rests in the development of a publicly accessible resource that will critically support and enhance the research on SUDEP molecular mechanisms and risk factors. Methods: STOP SUDEP Program functions as a partner within a multifaceted national and international network of families of patients with epilepsy, forensic pathologists, and organizations supporting or performing epilepsy research and education. This program adheres to rules of privacy and confidentiality protection while simultaneously collecting clinical, pathological, and molecular data and postmortem tissues and organs of patients that died due to SUDEP. Results: STOP Program has an established, IRB approved paradigm for developing a working relationship with participating families and other constituents. The collection of data and procurement of tissues have been in action since 2003 and the repository houses samples from more than 30 families of patients that dies due to SUDEP. Translational research and molecular analysis of the tissues is an inherent part of the program and detailed standardized procedures and protocols have been developed, quality tested, and applied on wide variety of conventional and alternative tissues. Conclusions: STOP SUDEP Program is the first SUDEP registry and tissue repository concurrently involved in the analysis and research of mechanisms and molecular risk factors of SUDEP with the goal of rapid translation of scientific findings into improved diagnostic and prevention of sudden death in epilepsy. It functions as an open network for partnership, collaboration, and future scientific investigations. Support: NINDS 3R01NS067013-02S1, 1R01 NS067013-01A1, CURE, Fiorito Fund for SUDEP Research, Emma Bursick Memorial Fund