Forming an International Epilepsy-Related Mortality Prevention Collaborative: A Global Survey of Metadata and Participation

Epilepsy-related mortality is recognised as an international priority within the World Health Organization (WHO) Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP), which sets critical targets to be achieved by 2031 through synergistic efforts. However, we lack the infrastructure for global and long-term surveillance to better understand the causes and contributions of epilepsy-related mortality. This limits the development of targeted strategies to reduce risks and prevent excess mortality in epilepsy.

This survey aims to understand what metadata exists on people who have died of epilepsy from all causes, such as status epilepticus, drownings, motor vehicle accidents, suicide, and sudden unexpected death in epilepsy (SUDEP) to inform the development of an international data collaborative. The survey includes 40 questions and should take approximately 20 minutes.

We invite clinicians, researchers and/or other professionals engaged in epilepsy research with metadata and/or relevant expertise in premature mortality to participate. Participation in this survey does not require meeting minimum data requirements, participation in the collaborative, or transfer of any data. Participants who express interest in participating and/or contributing data may be contacted by the investigators following completion of the survey. Completion of the survey confirms participation in the study.

Deadline for completion: 30 September 2026