Forward Thinking to Improve SUDEP Prevention, Awareness: Orrin Devinsky, MD

WATCH TIME: 2 minutes

"We’ve surveyed neurologists, epileptologists, [and] patients, and it’s terrible. Many more know about it [SUDEP] because we as a community have risen up, but the patient community has been the leader here, not the neurology community. Unfortunately, it remains something where the basic information is not known."

In recent years, there has been a growing amount of research dedicated towards sudden unexpected death in epilepsy (SUDEP) and trying to understand the underpinnings of how the event occurs and who may be at the greatest risk. Orrin Devinsky, MD, has been among the most notable names to influence the SUDEP research space, especially with his recent work identifying heart rate variability as a potential biomarker. Earlier this year, he was a senior author on a paper that found rates of SUDEP knowledge and education to be poorly low in adult neurology trainees.

Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone, and professor of neurology, NYU Grossman School of Medicine, feels as though it’s time to start pivoting from research, to creating substantial change. In an interview with NeurologyLive®, he shared his displeasure with the lack of SUDEP education and the need to improve those rates, first and foremost. He also discussed future thoughts on the necessary steps to create additional momentum within the space as well as why conversations with patients on SUDEP will help improve their overall risk.