The growing collaborative SUDEP movement in the US
[Part 4: Action; Buchhalter J, Lapham G, Wright C]
Over the last several years, a strong and multi-faceted movement to understand and prevent SUDEP has emerged in the US. This movement, which was driven initially by families and advocates desperate for answers, now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied together, to end sudden death in epilepsy by launching innovative research projects while advancing awareness, education and bereavement support services. What follows is a summary of key governmental and non-governmental efforts aimed at understanding SUDEP and advancing prevention in the US and beyond.
Partners Against Mortality in Epilepsy
Collaboration has been a hallmark of the progress made in the US. In June 2012, Partners Against Mortality in Epilepsy (PAME) held its first conference. This multiday event devoted to epilepsy mortality brought together clinicians, basic scientists, advocates and families from around the world. Participants gained a better understanding of epilepsy mortality, and learned about latest research, information and prevention strategies. A key feature of this first of its kind meeting was the ‘plenary’ nature of the sessions. The conference was so successful that PAME hosted a second conference in June 2014. The PAME meetings were conceived, planned, and coordinated by a diverse and growing group of organizations including:
American Epilepsy Society (AES)
Citizens United for Research in Epilepsy (CURE)
Epilepsy Foundation (EF)
Danny Did Foundation
Finding a Cure for Epilepsy and Seizures (FACES)
National Institute of Neurological Disorders and Stroke (NINDS)
Learn more about the PAME conference, its partners and the webinar series.
SUDEP Institute/Epilepsy Foundation
In February 2013 the Epilepsy Foundation launched the SUDEP Institute that unites leading epilepsy organizations including AES, CDC, CURE, Danny Did Foundation, NIH/NINDS and epilepsy experts. The SUDEP Institute works to prevent SUDEP and support people confronting the fear and anguish caused by SUDEP. Below are a few highlights of recent SUDEP Institute contributions:
Developed an extensive SUDEP section on epilepsy.com providing accurate and up-to-date information on SUDEP.
Launched the Managing Epilepsy and Seizures Infographic to thousands of neurologists and people living with epilepsy nationwide. This infographic includes information on SUDEP, as well as the other serious risks associated with epilepsy, in an easy to understand format that empowers people to take steps to protect themselves. It was viewed over 100,000 times in the first two months.
Hosted a SUDEP Surveillance Workshop and coordinates SUDEP surveillance efforts with medical examiners and coroners in an effort to better understand case reporting and classification.
Offers a nation-wide support network providing counseling, community, and resources for individuals and families affected by SUDEP.
CURE was an initial pioneer in SUDEP research and awareness. Starting in 2002, because of brave parents not willing to sit back and accept the status quo, CURE initiated some of the first SUDEP discussions among researchers, doctors and patients and raised crucial funds for research and awareness about this long-ignored, and devastating consequence of epilepsy. CURE launched the first targeted SUDEP research program in 2004 and since this time has funded 21 grants totaling more than $2 million. CURE has also collaborated in national and international SUDEP education and research activities with federal government agencies. Through these efforts, CURE has helped to build a foundation of basic, translational and clinical research that will inform future studies into the prevention of SUDEP. Learn more.
American Epilepsy Society
AES and the SUDEP Institute are collaborating on a webinar titled SUDEP Counseling: Risk Management for Clinicians. This two-part webinar presented by Drs. Jeffrey Buchhalter and Orrin Devinsky advises medical providers how to counsel patients and families regarding SUDEP as appropriate for the level of risk related to the individual patient's epilepsy, increasing patient and family understanding of the disorder and improving adherence to treatment recommendations. Learn more and sign up for this CME/CNE webinar.
North American SUDEP Registry
The North American SUDEP Registry (NASR) is an international collaboration documenting and analyzing cases of SUDEP to drive understanding of risk factors and develop preventative measures. The Registry collaborates with Medical Examiners to collect brain tissue and DNA; works with epilepsy centers and neurologists to foster research studies; and engages families in research to help unravel the mysteries of SUDEP. Learn more.
Danny Did Foundation
In January 2014 Illinois and New Jersey both passed important SUDEP legislation, which requires medical examiners to find out about a potential history of epilepsy as part of an autopsy and would help make sure all cases are reported to a national SUDEP registry. The Danny Did Foundation, which sponsors local educational and awareness efforts and research on seizure-detection devices, led the initiative to pass the Danny Stanton SUDEP Act and works closely with other organization to drive change in awareness of SUDEP. Learn more.
US National Institutes of Health & Centers for Disease Control
Researchers are collaborating with the launch of the SUDEP Center Without Walls (CWW) via a multi-million dollar grant from the National Institutes of Neurological Disorders and Stroke. The projects are led by Drs. Samden Lhatoo and Jeffrey Noebels, who will coordinate multi-center efforts to determine clinical, physiological and genetic risk factors to identify and in the future prevent SUDEP.
Important progress is being made to improve SUDEP surveillance in the US. The Sudden Death in the Young (SDY) Registry is a surveillance system that builds upon the activities of local and state child death review teams and CDC's Sudden Unexpected Infant Death (SUID) Case Registry. As part of this effort guidelines for recognizing and reporting SUDEP cases are being streamlined. Learn more.
Jeffrey Buchhalter, Professor of Pediatrics & Clinical Neurosciences, University of Calgary Faculty of Medicine, Canada
Gardiner Lapham, CURE Board Member, USA
Cyndi Wright, Executive Director, SUDEP Institute, USA
How to cite:
Buchhalter J, Lapham G, Wright C. The growing collaborative SUDEP movement in the US. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.