The Partners Against Mortality in Epilepsy (PAME) biennial conference brings together professionals (clinicians, basic science researchers and others) with public health officials and people who have epilepsy and their families/caregivers. The purpose is to increase understanding of mortality in epilepsy—particularly Sudden Unexpected Death In Epilepsy (SUDEP).
Organizations leading the PAME partnership are the American Epilepsy Society (AES), Citizens United for Research in Epilepsy (CURE), and Epilepsy Foundation (EF). The 2016 PAME conference is the third biennial meeting hosted by the AES and planned by the PAME partnership.
The overarching goal is to plan, conduct, and disseminate content from a multi-disciplinary meeting focused on knowledge sharing and translation that will identify:
- Trends in incidence of epilepsy-related mortality and prevention
- Gaps in the knowledge base about mortality in epilepsy
- Gaps in stakeholder understanding of mortality in epilepsy
- Opportunities to advance mortality research, prevention, and public awareness
- 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.
The PAME conference is unique in that it brings together a diverse group of stakeholders, including patients and their families who are invited to share their stories; healthcare providers who may earn continuing medical education (CME) credits for their participation under the auspices of AES; research scientists investigating mortality in epilepsy; early career fellows who are developing their research specialties and portfolios; research funders; and nonprofit organizations that provide patient support and lead advocacy efforts. Public policymakers and selected media representatives are also invited to participate.
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 2000s.
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.
New York Times: A Risk for Sudden Death in Epilepsy That Often Goes Unmentioned