Participants are being sought by a team of researchers who are working to understand the causes of epilepsy that seems to occur for no reason and why medications to treat epilepsy do or do not work for specific individuals. The study is called the Epilepsy Phenome Genome Project and is funded by a $15 million grant from the National Institutes of Health.
Two types of participants are needed for the study: people who have been diagnosed with epilepsy who also have a brother, sister, parent or child with epilepsy; and people who have been diagnosed with epilepsy that was caused by infantile spasms, Lennox-Gastaut Syndrome, Polymicrogyria, or Periventicular Heterotopia.
The goal of the 5-year study, sponsored by the National Institute of Neurological Disorders and Stroke, is to anonymously collect clinical and genetic information on siblings with epilepsy in order to improve diagnosis and treatment of the disease. It involves a blood draw, interviews and a review of medical records. Thirteen epilepsy centers across the country are participating in the study. Researchers say that for the project to be successful, it needs to be a huge collaboration of all people with epilepsy.
Daniel Lowenstein, M.D., professor and vice chairman in the Department of Neurology at the University of California, San Francisco, and a principal investor in the study, says the study will compare a person’s genetic code to the physical expression of the disease. “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,” he said.
For more information about the Epilepsy Phenome Genome Project, visit www.epgp.org, or call 888-279-EPGP.