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We hope to identify all cases of SUDEP that occur in New Zealand, so that we can determine the incidence of SUDEP here. More importantly, we want to understand the circumstances in which these deaths occur, and determine the risk factors, and whether there are other factors that may reduce the risk. To this end, we are also leading a major international case-control study, which is partly funded by the Health Research Council. When a case of SUDEP occurs in any of the participating centres, in New Zealand or one of more than a dozen other countries, the relatives of the deceased will be interviewed. Three people with epilepsy from the same centre who have not died, but who are the same gender and a similar age will also be interviewed. We will enquire about all aspects of epilepsy and its treatment, other health issues, living conditions, sleeping arrangements, family history of sudden death, and use of seizure-detection devices. We will specifically enquire about recent changes of brands of anti- seizure medications to see if this does seem to increase the risk of SUDEP. We would like to collect DNA from people who have died to send overseas for further international research. The Health and Disability Ethics committee would like us to determine if there is consensus amongst the New Zealand population that this is a reasonable thing to do, given that the people who have died have not consented to this. We would therefore like feedback on this issue (please email pbergin@adhb.govt.nz ). SUDEP is a tragedy for all involved. We hope to learn from all cases that occur from this time forward. We would like to hear of all cases of SUDEP that do occur in New Zealand. We would encourage all people with epilepsy who get invited to be control subjects to agree to be interviewed, in the hope that this will allow us to learn what is different about those who die. There are many different types of epilepsy and many different reasons why people can develop this disorder. For some people, seizures are easily controlled. For others though, epilepsy can be quite disabling, with serious complications. The most serious of these is sudden death. Sudden unexpected death in epilepsy (SUDEP) is uncommon, but it is devastating when it occurs. It has received relatively little attention until quite recently. Families of people who have died from SUDEP have often felt abandoned. International studies suggest that SUDEP occurs in about 1 in 1000 people with epilepsy per year. The reasons why it affects some people with epilepsy are unclear. We have reviewed coroners’ reports in New Zealand, and we recently reported our findings in the New Zealand Medical Journal 1 . We identified 166 probable or definite cases of SUDEP that occurred over a 10-year period. The number of cases varied from 11 to 26 per year; we suspect that this probably does not include all cases. Eighty seven percent of the deaths in our series occurred at home. Other studies have reported that the risks are greatest in people who have nocturnal tonic clonic seizures and who live alone 2 . It is often young people, who are otherwise well, who die from SUDEP. The Neurological Foundation, in conjunction with the Auckland Medical Research Foundation, are funding a prospective study of SUDEP in New Zealand. This is being undertaken by the EpiNet study group, in conjunction with the Neurological Association of New Zealand, Epilepsy New Zealand, and the New Zealand coroners. 1 Brennan M, Scott SM, Bergin PS. Sudden unexpected death in epilepsy (SUDEP) in New Zealand; a retrospective review. NZMJ 2020;133(1508) [published Online First: 17Jan2020] 2 Sveinsson O, Andersson T, Mattsson P, et al. Clinical risk factors in SUDEP: A nationwide population-based case-control study. Neurology 2020;94:1-11. doi: 10.1212/WNL.0000000000008741 [published Online First: 12 Dec 2019] A study into sudden unexpected death in epilepsy DR PETER BERGIN Chairman of the EpiNet Study Group, President of Epilepsy New Zealand pbergin@adhb.govt.nz Meet our Brain Awareness Month speakers Headlines 9