Support for Increased Awareness of SUDEP
American Epilepsy Society Position on Increased Awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and Expansion of Scientific Efforts to Understand SUDEP - Approved March 18, 2013
The epilepsy community and organizations listed strongly support increased awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and expansion of scientific efforts to understand SUDEP. We advocate for programs to educate medical examiners and coroners about SUDEP with mandatory reporting of SUDEP on death certificates and opportunities for families of individuals who suffered SUDEP to provide tissue to brain banks and medical information to registries for research to combat this major cause of mortality in people with epilepsy.
Despite the importance of the problem and the implications for intervention, SUDEP has not previously received widespread professional attention or patient education and awareness. The IOM report stressed recognition and prevention of SUDEP and identified lack of awareness of SUDEP by coroners and medical examiners as a significant problem. To accurately count the number and distribution of SUDEP cases, determine its cause, and—ultimately—seek opportunities for prevention, more accurate forensic data are needed. States have a critical leadership role to increase awareness and education about SUDEP in their medical communities, to better assist those families impacted, and to advance data collection and public health research on SUDEP.
The American Epilepsy Society (AES) is the main professional organization in the United States representing multi-specialty members including physicians, psychologists, nurses, social workers, and research scientists that provide care to people with epilepsy. The Society promotes research, interdisciplinary communication, and education for professionals dedicated to the prevention, optimal treatment, and cure of epilepsy.