On June 18, 2013, the SUDEP Institute hosted an all-day SUDEP Surveillance Workshop at New York University for medical examiners, coroners, forensic pathologists, neurologists, epileptologists, epidemiologists, epilepsy advocates, a grief counselor and mother who lost her daughter to SUDEP.
The SUDEP Surveillance Workshop was a huge success. After the workshop, all 26 participants felt they had a better understanding of SUDEP. Most not only intend to change their practice based on the information from the workshop, but are also eager and willing to share the information with their colleagues.
Attendees appreciated the opportunity for true collaboration and knowledge sharing not only between the epilepsy community and the death investigation community, but also within the very diverse death investigation community.
The SUDEP Institute is grateful to all attendees for sharing their insights, perspectives and expertise and is committed to continue this collaboration to improve SUDEP Surveillance.
The rate of SUDEP is approximately one death per 1,000 people with epilepsy per year. However, in people with frequent epileptic seizures that are poorly controlled with medications, the rate is approximately 1 in 150 per year. Furthermore, SUDEP is the leading cause of death in young people with uncontrolled epilepsy. Reported rates of SUDEP may be an underestimate because of poor case identification due to lack of awareness and inconsistencies in the investigation and recording of deaths.
Our hope is that the meeting will lead to more accurate data as well as clues to the cause and potential prevention methods of SUDEP.
We believe this collaboration is an important step to build SUDEP awareness, develop an accurate diagnosis of SUDEP at autopsy and support SUDEP and epilepsy mortality research.
If you have lost a loved one to SUDEP you can participate in research and be a part of the North American SUDEP Registry.