Building the Momentum Against SUDEP

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Friday, April 15, 2011

SUDEP is a tragic condition that is especially challenging for research investigation due to several reasons. Although the phenomenon had been mentioned in the medical literature 150 years ago, research publications on SUDEP did not increase until a few decades ago. Most animal studies appeared only in the last 10 years. SUDEP strikes without warning, and it frequently occurs unwitnessed, when the person is sleeping or alone. Doctors typically do not know about their patients' tragic death until a number of days or weeks have passed, and this situation deprives researchers of the ability to gather in timely fashion information about the patients' physical, social and psychological circumstances near the time of death. Autopsy rates are low, and exceptionally few SUDEP studies involve tissue specimens obtained from SUDEP persons.

The need for a more concerted effort against SUDEP was recognized by organizations of epilepsy advocates and health care professionals, such as the American Epilepsy Society (AES), Epilepsy Foundation (EF), and Citizens United for Epilepsy (CURE). Each of these organizations has had ongoing educational and research activities in SUDEP. With the strong encouragement and support of CURE, AES and EF set up a Joint Task Force on SUDEP, which was assigned the following charges: 1) develop a position statement describing if, when, what, and how SUDEP should be discussed with patients and their families and caregivers; 2) design methods by which the medical and lay communities become aware of the risk of SUDEP; 3) recommend research directions in SUDEP; 4) explore steps that organizations can take to perform large-scale, prospective studies of SUDEP to identify risk factors; and 5) identify possible preventive strategies for SUDEP. Following several meetings and discussions, the AES-EF Joint Task Force published in 2008 its findings and recommendation with regards to the five charges it was given.

Members of the Joint Task Force unanimously recognized that the momentum in the fight against SUDEP needs to be maintained beyond the role of the Task Force. To further that momentum, the National Institute of Neurological Disorders and Stroke (NINDS) organized a SUDEP Workshop in November of 2008. Invitees to the Workshop consisted of national and international clinicians, researchers, patient advocates, ethics and legal experts, including Epilepsy Therapy Project Co-Founders, Dr. Orrin Devinsky and Warren Lammert. Interactive discussions were emphasized and lectures were minimized at the workshop. The Workshop brought the issues raised at the Task Force into greater focus and detail, and with a more diverse perspective into SUDEP research and investigation. The report of the Workshop findings is slated to be published in a few months.

Following the NINDS Workshop, the momentum against SUDEP continued to build with the following developments. 1st is the formation of the SUDEP Coalition consisting of organizations and individuals who are partnering in the goal of solving the problem of SUDEP. The Coalition functions as a steering committee to work towards that goal. It is not meant to be an organization in and of itself; therefore, not all individuals or organizations interested in SUDEP are expected to be involved in the operational tasks of the Coalition. 2nd development is a recent advisory group meeting convened by the Centers for Disease Control (CDC) and NINDS to assess the possibility of conducting a surveillance of mortality in epilepsy, and the potential for funding a large scale multicenter SUDEP study. 3rd development is that since that meeting, CDC announced a funding opportunity for a pilot study on epilepsy mortality surveillance, and NINDS announced a funding opportunity for a large-scale multicenter SUDEP study, aptly termed Centers Without Walls in concept and operation.

There is clearly a mounting momentum against SUDEP in the last few years, which is very much needed to address the many research, education, and counseling issues in SUDEP. SUDEP is an exceptionally tragic and complex medical condition and public health issue that requires a consistent and concerted effort to defeat it.

The Epilepsy Therapy Project (ETP) is committed to SUDEP as a focus in our mission and to working together with other organizations to serve the epilepsy community. ETP’s current SUDEP projects and activities include:
  • Participation in the NIH workshop in Washington, DC and community efforts around SUDEP
  • Our New Therapy Grants Program solicits research proposals with a priority focus on SUDEP; grants recently awarded for several seizure detection and alert devices
  • Expansion of SUDEP coverage and content on  Working towards a partnership with SUDEP Aware and other community leaders and experts in SUDEP
  • AAN Taskforce on SUDEP represented by Dr. Jacqueline French, Chair, ETP Scientific Advisory Board
  • Support and participation in the SUDEP Center Without Walls Grant application



So E, Bainbridge J, Buchhalter J, Donalty J, Donner E, Finucane A, et al. Special Report: Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy. Epilepsia. 2009;50:917-22.

Authored by: Elson L. So MD on 4/2011

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