Research News from the first ever Partners Against Mortality in Epilepsy (PAME) Meeting

Among the highlights of the recent Partners Against Mortality in Epilepsy (PAME) meeting was the chance to learn about cutting-edge research that is underway to unravel the mystery of SUDEP. We learned that scientists and physician researchers are using many techniques to study SUDEP and each provides a unique opportunity to discover a possible piece of the puzzle.

Clinical research is the science of studying people to learn more about a disorder. At the PAME meeting researchers reported on several approaches to using clinical research to learn more about SUDEP. One such approach is to observe people with epilepsy during seizures, to understand more about what happens to people with epilepsy while a seizure is underway. Dr. Lisa Bateman, at the University of California at Davis, studies people with epilepsy that are admitted to Epilepsy Monitoring Units (EMU). Dr. Bateman collects information about oxygen levels, breathing rate, heart rhythm and brain waves during seizures, to better understand the effects that seizures have on these critical functions. The long-term goal of this line of research is to develop interventions that will reduce any dangerous effects of seizures.

A European research group is also collecting information from EMUs. Dr. Torbjorn Tomson, of the Karolinska Institute in Sweden, explained that the Mortemus study is carefully collecting information on deaths and near-deaths that have occurred during seizure monitoring in an EMU. It is very rare for a death, or near-death, to occur during an EMU stay. For that reason, the Mortemus study includes more than 140 hospitals around the world. They will be able to study the electroenceph-alogram (EEG) recordings, or brainwaves, of people at the time of the fatal or near-fatal event and search for any patterns that can help predict which people with epilepsy are at an increased risk of SUDEP.

Studying people is not the only way to approach the problem of SUDEP. Attendees at PAME heard from Dr. Cassondra Bauer, a scientist and Doctor of Veterinary Medicine at the Southwest National Primate Research Centre in Texas. Dr. Bauer and her colleagues have observed that epilepsy is more common in baboons than it is in humans. The facility in Texas houses 1900 baboons and deaths are not infrequent among those baboons with epilepsy. The researchers plan to monitor directly from the brain surface of baboons with epilepsy, to learn more about the brainwave patterns prior to death in epilepsy. 

Smaller animals also provide a model to study SUDEP. Dr. Carl Faingold, at Southern Illinois University, studies a type of mouse that is genetically prone to seizures. Dr. Faingold and his colleagues have observed that these mice often die due to breathing problems following a seizure. They are exploring the use of different medications to modify the breathing patterns and risk of death following seizures in these animals. Other scientists, such as Dr. Gordon Buchanan of Yale University and Dr. George Richerson of University of Iowa, explained how they can study levels of neurotransmitters in the brainstem (breathing control centre) of mice to learn more about how and why these abnormal breathing patterns may occur.

Animals can also be used to explore the role of the heart in SUDEP deaths. Research from the lab of Dr. Jeffrey Noebels at Baylor University is focused on the role of a brain-heart connection in SUDEP. By studying mice, Dr. Noebels and colleagues have discovered a genetic mutation present in the hearts and brains of certain mice that predispose these animals to both heart rhythm abnormalities and seizures. This suggests that certain people with epilepsy may carry a genetic risk for heart rhythm problems and that, in the future, we may be able to screen people for this risk.

Attendees at PAME left the meeting with a shared belief that continuing the existing studies and forging new research partnerships will provide greater insights into the mystery of SUDEP. Together, the efforts of physician researchers  and scientists are generating new discoveries with the long-term goal to prevent this devastating outcome of epilepsy.