SUDEP History & Background
Sudden Unexpected Death in Epilepsy (SUDEP) is now recognized as the leading cause of mortality associated with epilepsy excluding status epilepticus and underlying etiologies. Despite the importance of the problem and the implications for intervention, SUDEP had not received widespread professional attention in the United States prior to the mid 2000’s.
The general level of awareness and interest in SUDEP has grown as evidenced by the growing numbers of publications, posters/presentations and attendance at the SUDEP SIG at recent AES Annual meetings. In addition, there has been a significant rise in the number of inquiries from clinical and basic scientists as well as from patients and families via advocacy organizations.
People desire more information regarding cutting edge research, participation in studies, possible collaborations and networking. This “pent up demand” led to the original concept to have a meeting that would meet the multiple needs of the SUDEP community.
PAME 2014 Goals & Objectives
Overall meeting goal:
Prevent mortality in epilepsy through a rigorous scientific meeting that:
- Promotes understanding of the latest developments in SUDEP and epilepsy mortality research,
- Stimulates ideas and collaborations to advance discovery,
- Hastens efforts to increase public awareness and education for professionals and people living with epilepsy.
- Strengthen the capacity of health care providers to discuss epilepsy-mortality broadly and SUDEP specifically, identify risk factors, communicate prevention strategies
- Address gaps in care for people with epilepsy and provide strategies for improvement.
- Identify progress made in epilepsy mortality and SUDEP research and direction for future research as well as funding and collaboration opportunities.
- Build collaborations across medical disciplines and among families/advocates to bolster research opportunities and participation.
- Provide a forum for people with epilepsy and their families to learn about the latest in epilepsy mortality, especially SUDEP research.
- Enable people with epilepsy, families and lay organizations to advance SUDEP awareness and education by facilitating collaborations between support groups, funding sources, health care professionals and others, both nationally and internationally.
- Allow opportunity for families living with and bereaved by epilepsy to share their stories and support one another.
Goals in line with IOM recommendations:
With the revised goals and objectives, PAME 2014 will aid in 8 of the 13 IOM recommendations:
Rec 2: Continue to expand collaborative surveillance and data collection efforts.
Rec 3: Develop and evaluate prevention efforts for epilepsy and it’s consequences.
Rec 4: Improve the early identification of epilepsy and it’s comorbid health conditions.
Rec 7: Improve health professional education about the epilepsies.
Rec 9: Improve and expand educational opportunities for people with epilepsy and their families
Rec 11: Coordinate public awareness efforts.
Rec 12: Continue and expand vision 20/220 working groups and collaborative partnerships
Rec 13: Engage in education, dissemination and advocacy for improved epilepsy care and services