Launching the Global Genetic Epilepsy Registry

Houston 2016. Tomorrow, December 2, 2016 will commence the 70th meeting of the American Epilepsy Society Meeting. What sets this meeting apart is that, as never before, researchers and families from around the world are working together to develop individualized treatments that cure epilepsy–a dream of “precision medicine” in epilepsy. 

A screenshot of the Global Genetic Epilepsy Registry at

A screenshot of the Global Genetic Epilepsy Registry at

Epilepsy genes. Never had this dream been closer to reality. A few years ago, there were only a handful of epilepsy genes, but now 76 genes are established, with more being discovered every couple of weeks. And for each gene, doctors are looking for the cure.

Registry. To bring the dream of cures closer to reality, the International League Against Epilepsy (a group of scientists united to cure epilepsy), and patients and families around the world have come together to launch the Global Genetic Epilepsy Registry. The purpose of this registry is to form one place where people with genetic epilepsy can connect with researchers who are studying a specific gene. Because some genes are so rare that only a few families around the world have them, doctors need to partner with each family to discover the nature of these genes – and what will treat these epilepsies.

Join. Over the next year, there is hope that new treatments will be developed for many more genes. But progress will only happen when patients and researchers work together. To join this historic effort, visit Patients or researchers can join in about 5 minutes, and be connected with information about new studies and discoveries.

Outlook. We hope that by this time next year, more families will have better treatments and even cures. Check out the registry website to learn more, and become part of the epilepsy genetics research effort!

Catharine Freyer is a director of research at the University of California and is working on global epilepsy genetics collaboratives such as the Human Epilepsy Project, the Epi4K PCI Core, and the Epi25 Project, as well as research in stroke and patient education. With Kevin McKenna, she worked on the Epilepsy Phenome/Genome Project.