Making History with the Epilepsy Phenome/Genome Project

There has been a lot of press about The Epilepsy Phenome/Genome Project (EPGP), the largest epilepsy study in history.

Over the last couple of months, there has been a lot of press about The Epilepsy Phenome/Genome Project (EPGP), the largest epilepsy study in history. This five-year project received a $15 million grant from the National Institutes of Health/National Institute for Neurological Diseases and Stroke, which will be disbursed to 50 investigators nationwide who are studying the causes of the disorder, why patients “respond differently to medications, and why some families have several people with seizures.” Thirteen medical institutions, including Baylor College of Medicine, Children’s Hospital of Philadelphia, Johns Hopkins School of Medicine, and Mayo Clinic College of Medicine, will be working with the investigators to not only help recruit 3,750 epilepsy patients and 3,000 controls between ages four weeks to 60 years, but also collect blood samples and additional information. The goal of EPGP is “to collect, anonymously, a repository of clinical and genetic information on siblings with epilepsy in order to improve the diagnosis and treatment of epilepsy.”

The two principal investigators of this study believe that EPGP will have great significance in the treatment of patients with epilepsy.

Orrin Devinksy, MD, professor of neurology at the NYU School of Medicine believes that EPGP offers the opportunity to “revolutionize epilepsy care. It could allow us to match safety and effectiveness of a drug to a specific person, focus research on new therapeutic targets, and crack the code on the causes of common forms of epilepsy.”

Daniel Lowenstein, MD, professor and vice chairman in the Department of Neurology at the University of California, San Francisco, said, “Our dream is that, in the not-too-distant future, we will be able to do a gene profile before we ever make a decision about which drug to use on a patient.”

Neurologists who would like to learn more about the project should listen to the next episode of Epilepsy Talk Radio, “The Study That Can Unlock the Mysteries of Epilepsy,” on Wednesday, November 5 at 9:00PM (ET).

What are your thoughts about the EPGP? Do you think it will provide what the researchers are hoping it will? Are you talking about the study with your epilepsy patients?