SUDEP Surveillance Efforts

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.

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.

These types of collaborative efforts are critical to improved surveillance and awareness.  If you would like to help improve SUDEP Surveillance in your area, please contact sudep@efa.org.

Additional Resources:

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

If you have lost a loved one to SUDEP you can participate in research and be a part of the North American SUDEP Registry.

 

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