Abstracts

Rationale: Rationale SUDEP is a leading cause of death among people with epilepsy. Surveillance efforts in North America are limited and protocols for investigation of epilepsy-related mortalities remain inconsistent. Epilepsy is often not coded on death certificates by medical examiners and coroners. The number of cases at any individual epilepsy center is limited, making coordinated research efforts critical. Many deaths are not identified and/or reported to the treating epilepsy doctor until several days post-mortem. At this point, brain tissue has limited research value and DNA may not be available. Methods: Methods In 2012, the North American SUDEP Registry (NASR) was formed by a group of epileptologists, epidemiologists, medical examiners, and affected family members from the United States and Canada, in collaboration with the SUDEP Institute and more than 10 lay organizations including EF, CURE, Danny Did, and FACES.The mission of NASR is to facilitate research into the underlying mechanisms and risk factors for SUDEP and to identify prevention strategies.Objectives are to: 1) develop a repository of bio-specimens and clinical data, 2) facilitate surveillance of epilepsy-related mortality, 3) support collaborative research efforts; and 4) make available specimens and clinical data to the broader scientific community. Initially SUDEP cases were focused on those with biospecimens or videoEEG-recorded seizures, but recently there is expansion to all cases reported by family members Results: Results NASR has successfully initiated collaborative efforts to collect clinical, DNA and brain specimens. 39 SUDEP cases (8 Dup15q, 6 Dravet; 25 others) have been enrolled and 66 controls (Dravet, 33, Dup15q 33). 14 brains and 28 DNA specimens have been collected. Case-control studies for SUDEP in Dup15q and Dravet syndrome have been submitted for publication or presentation. NASR has a full-time employee at the San Diego Medical Examiner's office for surveillance and collection of biospecimens. NASR was involved in legislation passed in NJ and IL for surveillance and for biospecimen collection in NJ in SUDEP. Ongoing plans are to increase collaborations with: Medical Examiners and Coroners; epilepsy centers;prospective enrollment of patients for brain donation and research studies should they die due to SUDEP; ongoing research projects (eg, NIH-CDC Sudden Death in Young); and organizations (eg, SUDEP Institute, CURE, Danny Did, SUDC) for bereavement support and assistance with awareness and outreach. Conclusions: Conclusions NASR has been created as a resource to the epilepsy community to facilitate research and collaborative studies on SUDEP. We are actively seeking referral of all cases, past and future. The organization welcomes further engagement of families, lay organizations, epileptologists and epilepsy centers in our outreach, repository, and research efforts