At some point in their lifetime, an estimated 1 in 26 people will develop epilepsy— brain disorders characterized by seizures in which clusters of nerve cells, or neurons, are activated in an abnormal synchronized manner. Treatments such as medication, surgery, and medical devices can help approximately 60% of people with epilepsy control seizures, although current therapies can carry side effects and remain ineffective for a significant proportion of people with epilepsy. The scientific community and multiple stakeholders worked with NINDS to establish the Epilepsy benchmarks to help guide research. In response, NINDS funds a varied portfolio of investigator-initiated research and targeted investments in programs that bring multiple teams together to address high-impact questions in epilepsy.
These NINDS investments include a unique consortium of investigators from around the country and abroad called the Epilepsy “Centers without Walls” (CWOW). One of the main goals of these centers is to focus on major hurdles to the advancement of epilepsy research and treatment that are likely to only be overcome through large, collaborative approaches. Launched in 2011, the first CWOW, called Epi4K, has mined data from the genomes of 4,000 individuals with epilepsy and has identified several genes related to childhood epilepsies.
Following up on the success of the Epi4K program, NINDS has recently awarded a second CWOW for Sudden Unexpected Death in Epilepsy (SUDEP), which is the sudden and premature death of a person with epilepsy without apparent or known cause. The researchers assembled for the Center for SUDEP Research will identify factors such as genetic and brain structure irregularities that increase the risk of SUDEP with the goal of preventing these tragic deaths. NINDS program director Brandy Fureman and I announced the awards for the SUDEP center at a press conference at the annual American Epilepsy Society meeting this morning in Seattle. You can read more about the Center for SUDEP Research in this blog post, and click for a video and for an infographic(pdf, 808 KB) about the new center.
NINDS has also recently received applications for a third Epilepsy CWOW focused on developing interventions that will change the course of the disease or prevent it from developing in those at high risk. It is hoped that novel disease-modifying or anti-epileptogenic treatments will result from this CWOW and compliment the current anti-seizure strategy. These applications will be reviewed in Spring 2015.
In addition to the Epilepsy Center without Walls, NINDS is supporting several significant ongoing projects spanning the research spectrum from basic science to Phase III clinical trials:
- NINDS co-sponsored a contest to predict the onset of seizures using large datasets of intracranial recordings acquired from epilepsy patients and dogs with naturally occurring epilepsy. More than 500 teams downloaded the data and submitted algorithms for optimizing seizure prediction. The winning team’s ability to predict seizures represents a vast improvement over previous methods.
- NINDS continues to support the Anticonvulsant Screening Program (ASP), a decades-long search for new drugs to treat epilepsy. The program screens hundreds of compounds per year and data from these tests can be accessed via a publicly available web-based search engine called PANAChE. It also continually makes improvements to methods for testing potential drugs and the design of clinical trials.
- NINDS has funded a Phase II study to test the safety and feasibility of administering the medication Levetiracetam via a naso-gastric tube to control seizures in children with cerebral malaria.
- NINDS has supported a recently completed investigator-initiated Phase III trial of a new treatment for neurocysticercosis—a parasitic infection of the brain that is a leading cause of seizures and epilepsy in the developing world, and increasingly, in developed nations like the U.S. because of immigration from endemic regions.
- NINDS has recently funded the Established Status Epilepticus Treatment Trial (ESETT), which is a Phase III trial comparative the effectiveness of three anticonvulsants for individuals with status epilepticus who have failed to respond to benzodiazepines. The ESETT trial will be conducted by the Neurological Emergency Treatment Trial (NETT) network.
NINDS is committed to supporting a wide array of basic, clinical and translational research studies on the many types and various possible causes of epilepsy. We also continue to seek novel approaches, such as the seizure prediction contest and the Epilepsy Centers without Walls, to solve difficult or unexplored challenges in the treatment and prevention of epilepsy.