Inviting Your Feedback on Two Crowdsourcing Campaigns for the 2020 Epilepsy Research Benchmarks and Transformative Research Priorities

The epilepsies are a devastating set of disorders characterized by recurring seizures. Seizures occur when millions of nerve cells simultaneously fire, disrupting normal brain activity during, and for some time after, these network bursts of synchronous firing. Some seizures affect the function of a part of the brain; others affect total brain function and cause loss of consciousness. Some persons with epilepsy suffer from seizures separated by months; others have multiple seizures daily. Some seizures are obvious to people around them; some are more subtle. Living with epilepsy is an extraordinary challenge, not only for the individual who experiences the seizures, but also for caregivers and loved ones. Even intermittent seizures carry serious morbidity. Their onset cannot be predicted, rendering many activities such as driving, working with machinery, handling infants, and walking stairs potentially dangerous. Epilepsy affects people of all ages and can result from myriad causes, including genetic variations, illness, head injury, or abnormal brain development. Approximately 1 in 26 people will develop epilepsy or recurring seizures in their lifetimes, with approximately 3.4 million Americans affected. Treatments such as medication, surgery, and medical devices can help approximately 60%-70% of epileptic patients in controlling their seizures, but current therapies can carry side effects and remain ineffective for many patients. NINDS has a long commitment to research focused on advancing the treatment of persons with epilepsy. Over the course of my career, this research has expanded the number of drugs to treat seizures from a handful to many dozen. This important work continues now, as  the BRAIN Initiative is piloting direct recording and stimulation of brain tissue to stop seizures before they begin.

To set epilepsy research priorities, NINDS has sponsored a series of conferences in partnership with epilepsy advocacy and professional organizations to assess progress in epilepsy research and help set a research agenda for future years. These Curing the Epilepsies conferences have led to the development of Benchmarks for Epilepsy Research, reflecting priorities shared across the epilepsy community for research toward clinically meaningful advances in understanding and treating the epilepsies. These conferences were previously held in 2000, 2007, and 2014, and the resulting Benchmarks have brought attention to goals such as preventing epileptogenesis, addressing aspects of epilepsy beyond seizures, and confronting the challenge of sudden unexpected death in epilepsy (SUDEP). The most recent Benchmarks were developed in 2014, and it is now time to update these important research priorities again.

In partnership with the American Epilepsy Society (AES) and the Epilepsy Leadership Council, NINDS will hold the next Curing the Epilepsies conference from January 4-6, 2021. Originally scheduled for April 2020, the conference will now be held online. Investigators and individuals interested in finding cures for the epilepsies will participate in a virtual forum and discussion of the progress made in understanding the epilepsies and developing potential cures. A main outcome and priority of the meeting will be an update of the Epilepsy Research Benchmarks for the next 5-7 years. A proposed draft for the updated 2020 Benchmarks is currently available for public comment using the NINDS Public Crowdsourcing community.

In addition, we invite your feedback on a second, separate campaign: Transformative Research Priorities for the Epilepsies – Audacious goals for inspiring change in epilepsy research! This set of research ideas, developed by the AES Epilepsy Research Benchmarks Committee and reflecting extensive input from the broader community, comprise objectives that, if accomplished, would significantly move research forward toward better treatments for the epilepsies. We would love to hear what you think are the most important Transformative Epilepsy Research Priorities.

I encourage you to provide your feedback, comments and ideas on both campaigns. Please visit NINDS Ideascale Community to share your thoughts and ideas for epilepsy research.

At NIH and NINDS, we are dedicated to understanding and finding cures for the epilepsies and/or preventing epilepsy in individuals at risk for seizures. NINDS has led several epilepsy research initiatives, including the establishment of the Centers Without Walls (CWOW) program to rapidly advance epilepsy research through promoting interdisciplinary, collaborative research. Through this initiative, Epi4K catalyzed international collaboration in epilepsy genetics by using the latest techniques to sequence and analyze DNA from 4000 epilepsy patients and their relatives. Meanwhile, the Center for SUDEP Research brought together extensive expertise to understand Sudden Unexplained Death in Epilepsy (SUDEP), the leading cause of death from epilepsy. Further, the Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EPiBios) finds strategies to prevent epilepsy after traumatic brain injury. The newest CWOW, the Channelopathy-Associated Epilepsy Research Center, focuses on understanding the role of sodium and potassium channel genes in pediatric epilepsy, to help improve the accuracy of epilepsy diagnoses and inform therapy and drug development. The center combines high-throughput technologies on non-neuronal cells with studies of human neuron and animal model systems. Finally, NINDS recently awarded a grant for the Epilepsy Multiplatform Variant Prediction (EpiMVP) CWOW that will develop a modular, highly integrated platform approach to accelerate determination of the functional, pharmacological, neuronal network and whole animal consequences of genetic variants implicated in a range of clinical epilepsy types.

Like many other efforts and initiatives at NINDS and NIH, progress occurs through collaboration and partnerships. We want your feedback as we update the Benchmarks for Epilepsy Research and work together toward understanding and treating this devastating set of neurological disorders.

Related Resources:
Comment on the 2020 Epilepsy Research Benchmarks
Comment on the Transformative Research Priorities