Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy.
Pickard H., O'Loughlin EK., Holmay M., Lapham G., Buchhalter J., Donovan B., Bhandare A., Wykes RC., Sen A., Lubbers LS.
Sudden unexpected death in epilepsy (SUDEP) is a significant research and community priority. In recent years, diverse stakeholders, including researchers, clinicians, charity organizations, people affected by epilepsy, and bereaved families, have collectively identified priorities and recommendations to accelerate understanding of SUDEP risk and prevention. Through comprehensive discussions, shared learnings and priorities have emerged across three broad areas, including clinical research, preclinical science, and awareness and education. To address these priorities, actionable recommendations that focus on providing better infrastructure, tools, data, access and education to advance prevention of SUDEP have been defined.