Driving Therapeutic Innovations: My Seizure Gauge Challenge

In a 2016 Epilepsy Foundation community survey, an overwhelming majority of respondents, regardless of seizure frequency and type, selected unpredictability of seizures as a top issue. Many wrote about the fear of not knowing when a seizure will start and not knowing what triggers the seizure onset. This led us to ask the following question: 

Working to Make Seizure Forecasting Possible

In October 2017, the Foundation held a workshop to discuss and assess the state of the science behind seizure forecasting. During the collaborative workshop, clinicians, engineers, data scientists, and pharma/device companies reviewed feedback from people living with epilepsy and their families and decided to take on seizure forecasting as an innovation project of the Epilepsy Innovation Institute. The discussions of the workshop were published in eNeuro in December 2017.

The following year, in October 2018, the Epilepsy Innovation Institute awarded a $3 million multi-year grant to an international team of scientists, researchers and interoperability experts to evaluate biosensors that can track an individual's physiology, behavior, and environment to improve seizure forecasting. The international team leads for this effort are Dr. Benjamin Brinkmann (Mayo Clinic), Dr. Mark Richardson (Kings College London), and Dr. Dean Freestone (Seer Medical/Melbourne University). 

The team was selected following a seven-month long, peer-reviewed process. The team's plan is to recruit and collect data from people with epilepsy who have received an implanted device that can measure brain activity — such as electroencephalogram (EEG) devices — and pair this with wearable devices to better understand changes in the body that induce or allow for seizure activity. Their charge is to determine the types of measurements that are needed for a reliable seizure forecasting prototype device.

"Unpredictability, not knowing when or why a seizure starts, is a major challenge for those living with epilepsy," said Sonya Dumanis PhD, senior director of innovation at the Epilepsy Foundation. "We have a unique opportunity to create an individualized seizure gauge that will allow a person with epilepsy to monitor the likelihood of a seizure on a daily basis."

Next Steps

In the initial phase of the award, the solution team leads are evaluating biosensors that can track an individual's physiology, behavior and environment from a range of commercially available devices. In the past year, the team has already recruited over 85 individuals for this effort and captured a couple hundred seizures from wearable devices in the process.  

Following data quality assurance testing, the team will then select up to three peripheral sensors that move forward for seizure forecast testing in year two. Individuals will be pairing the peripheral sensors selected with their already implanted EEG recordings. The ambulatory EEG system used will depend on the recruitment site: Mayo Clinic (Medtronic RC+S intracranial device), King's College London (UNEEG 24/7 ambulatory subscalp EEG), and the University of Melbourne (Seer Medical ambulatory video EEG, SeerGP app, and subscalp EEG). 

In July of this year, the first participant at King's College London was already implanted with the long-term subscalp monitoring UNEEG device. She will live with the implant for one year in order to investigate the feasibility of minimally invasive seizure forecasting.

In the third year of the initiative, data will also be shared with the research community through crowd-sourcing platforms to facilitate algorithm development. The platform for data sharing has already been launched and is known as www.epilepsyecosystem.org.

Laying the Ground Work

The My Seizure Gauge initiative lays the groundwork to know when a seizure is likely or unlikely — empowering people to take control of their actions, stop a seizure before it starts, and explain why certain environments or states may trigger a seizure. It could also aid in developing personalize dosing of medication and device stimulation to reduce medication side effects.  

For more information, visit Epilepsy.com/MySeizureGauge.