Dr. Larry Hirsch and other investigators published a report of the National Institutes of Health Workshop on Sudden Unexpected Death in Epilepsy (SUDEP) in the May 31, 2011, issue of the journal Neurology. The report summarizes the discussions and recommendations of the workgroup including lessons learned from investigations of sudden infant death syndrome, sudden cardiac death, autonomic and respiratory physiology, medical devices, genetics and animal models. Their recommendations include educating all people with epilepsy about SUDEP as part of the general education on the potential harm of seizures except in extenuating circumstances. Multi-center collaborative research should be encouraged, especially investigations with direct implications for the prevention of SUDEP. An ongoing SUDEP coalition has been established to facilitate this effort.
This report is essential reading for all professionals that deal with epilepsy. In this document we see the blueprint for future trials, future collaborations and the future education of both professionals and patients and their caregivers who have epilepsy.