The International League Against Epilepsy (ILAE) has launched a global survey aimed at supporting the establishment of an international collaborative platform focused on epilepsy-related mortality. The organization is seeking clinicians, researchers, and other professionals with relevant data or experience concerning premature deaths among people with epilepsy.
Epilepsy-related mortality has been identified as an international priority under the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP). The plan sets out key targets to be achieved by 2031. However, as the ILAE notes, there is currently no infrastructure for the long-term, global monitoring of causes of death associated with epilepsy. This makes it more difficult to develop effective preventive measures and reduce the elevated risk of death in this patient population.
The survey announced by the ILAE is intended to determine what data are already being collected on people who have died from epilepsy-related causes.
The survey consists of 40 questions and should take approximately 20 minutes to complete. Physicians, researchers, and other professionals working in the field of epilepsy who have access to relevant datasets or expertise in premature mortality are invited to participate. The ILAE emphasizes that taking part in the survey does not entail any obligation to join the initiative at a later stage or to share any data held by participants.
The deadline for submitting responses is 30 September 2026.
More information and the survey are available on the ILAE website.