Recently Published Results of U.S. Government-Sponsored Workshop on SUDEP

I had shared with you in the article previous to this one about how the momentum against SUDEP (Sudden Unexpected Death in Epilepsy) keeps on building. This momentum results from a continuing effort by the scientific and the lay communities in finding ways to expand research and education in SUDEP. Throughout this continuing effort, there were sequential events that have been important in advancing the mission against SUDEP. In 2007, the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) had made the recommendation to the American Epilepsy Society and Epilepsy Foundation (AES/EF) Joint Task Force on SUDEP that a workshop be conducted to further the tasks for solving SUDEP. Subsequently, a three-day NIH/NINDS Workshop on SUDEP was conducted in November of 2008. As with other NIH/NINDS workshops recent to that time, the SUDEP Workshop emphasized learning and sharing of ideas across specialties, which was enhanced by emphasis on discussion rather than lectures. Moreover, experts in other medical fields such as Sudden Infant Death Syndrome, autonomic and cardiac dysfunction were invited to participate, so that workshop participants can “think outside of their box.” Similar to the AES/EF Joint Task Force SUDEP meeting in 2007, the NIH/NINDS Workshop had a scientific workgroup and an education workgroup that convened separately at first, and later jointly to refine and integrate their findings and recommendations. The report of this Workshop was just published in June in the journal Neurology (volume 76, page 1932 – 1938).

Readers are enjoined to look at the Report of the NIH/NINDS Workshop on SUDEP for the many things that experts in other fields had informed the participants on ideas and suggestions regarding further SUDEP research and education. Table 1 in the Report gives a succinct summary of these ideas and suggestions, many of which I hope will be pursued in the next one to three years. Additionally, the Report provides a summary of recent discoveries in different areas of research that involves different organs of the body, all of which are potential avenues which when explored may lead to a better understanding of the mechanisms underlying SUDEP. Keep in mind that the summary of these recent discoveries is not meant to be an exhaustive review of each area of new knowledge. Rather, the Report is best taken as a distillation of ideas from investigators and advocates on SUDEP research and education.

SUDEP education and awareness need just as much promotion and support as SUDEP research. Clinical research in SUDEP cannot advance unless we have the support of the public, and the cooperation of patients and families. Clinical research in SUDEP will increasingly need the participation of epilepsy persons through volunteering, which in some cases will involve undergoing tests and submitting specimens of their tissues. Moreover, the necessity of autopsy would need to be made clear, because we badly need autopsy examination, both to make sure that the diagnosis of SUDEP was correctly made, and to detect any clue that may lead us to the cause or causes of SUDEP. Genetic studies are just now being brought from animal to human studies.

Table 2 of the Report lists the avenues of research related to SUDEP education and awareness. We still need to find out from patients and their families how they could best learn about SUDEP, and when are they ready to do so. We need to know about the impact of SUDEP education on persons with recently diagnosed seizure disorder, persons with well-controlled and persons with poorly controlled epilepsy. Health care providers including doctors also need to know more about SUDEP, and we need to understand what barriers exist to interfere or prevent this effort. Guidelines on SUDEP counseling and education are currently being jointly developed by the American Academy of Neurology and the American Epilepsy Society, along with the participation of many other advocacy organizations.