Why Increased SUDEP Surveillance is Needed
Epilepsy is associated with substantially higher rates of mortality than experienced in the population as a whole, with SUDEP being the most common cause of epilepsy-related deaths. 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 2012 Institute of Medicine report, Epilepsy Across the Spectrum, 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.
Tackling SUDEP Surveillance Needs
The SUDEP Institute is dedicated to helping drive efforts to improve SUDEP Surveillance. In June 2013 we hosted a SUDEP Surveillance Workshop with the goal of brining medical examiners, coroners, forensic pathologists, neurologists, epileptologists, epidemiologists, epilepsy advocates, a families together to determine the next steps to collect more accurate data as well as clues to the cause and potential prevention methods of SUDEP.
We are also working with the National Association of Medical Examiners to understand how epilepsy deaths are currently being reported and to develop training material to help death investigators better understand, recognize and report SUDEP.
The Sudden Death in Young Registry (SDY) is another effort hoping to improve SUDEP Surveillance. The SDY Registry is a resource designed to increase understanding of the causes and risk factors for sudden death in the young. It is funded by theNational Heart, Lung, and Blood Institute (NHLBI), the National Institute of Neurological Disorders and Stroke (NINDS), and the Centers for Disease Control and Prevention (CDC). Learn more.
In January 2014, Illinois and New Jersey both passed SUDEP legislation. Learn about this legislation. Currently New York State is also considering SUDEP legislation. Our affiliate network is working to build relationships and educate their regional death investigator community on SUDEP and improve epilepsy mortality surveillance policies in other states.
In April 2015, the Epilepsy Foundation SUDEP Institute partnered with the NYU School of Medicine to developed an Investigating Death in Epilepsy Patients Webinar. This unprecedented partnership led by the SUDEP Institute brought together all national death investigation organizations as well as the CDC, NIH, and the North American SUDEP Registry. Continuing Medical Education credit was provided by NYU School of Medicine. Post webinar evaluations demonstrated increases in knowledge of epilepsy mortality, awareness about how to accurately perform death scene investigations and autopsies, and understanding about how to fill out the death certificate so epilepsy deaths can be tracked. Share this free webinar with death investigators in your community.
In June 2015, the local Epilepsy Foundations in New York and our national public policy team collaborated under the lead of Jeanne Donalty to pass SUDEP legislation. Jeanne lost her 21 year old son, Chris, to SUDEP in 2002. New York legislature passed S. 1789 and A. 2359 which would require the medical portion of a death certificate to include a determination of whether the person suffered a sudden, unexpected death in epilepsy (SUDEP).
While SUDEP legislation may raise awareness and is desired by many families, the SUDEP Institute and epilepsy researchers are finding the laws are difficult to implement and results are limited without providing death investigators the appropriate education materials and financial resouces. As a result, the SUDEP Institute emphasis has shifted to partnering with death investigators to develop educational tools that will raise awareness for SUDEP, explain the importance and value in categorizing epilepsy deaths correctly, and provide guidance on how to do the investigations.
In May 2016, the SUDEP Institute, the North American SUDEP Registry, and the National Association of Medical Examiners hosted a workshop to begin writing a SUDEP death investigation position paper that will raise awareness for SUDEP in the death investigation community. This position paper will give guidance on how epilepsy deaths should be investigated and reported. The paper is currently in the review process with the goal to release the paper in the spring on 2017.
Collaborative efforts with death investigators and researchers are critical to improved surveillance and awareness. If you would like to help improve SUDEP Surveillance in your area, please contact firstname.lastname@example.org.
- Read the SUDEP & Epilepsy Joint Statement of Epilepsy Foundation & American Epilepsy Society
- Read an article by Dan Freidman, MD on the importance of SUDEP Surveillance
- Read the New Jersey SUDEP Bill
- Read the Illinois SUDEP Bill
- Read the New York Bill S. 1789 and A. 2359