Epilepsy Phenome/Genome Project

The Epilepsy Phenome/Genome Project (EPGP) is the largest study ever created to understand how genetics influence epilepsy. Researchers from major epilepsy centers around the

United States will collect blood samples and detailed seizure histories on a group of people with specific types of epilepsy. This information will be used to identify genes that contribute to a person developing epilepsy and the response to seizure medications. The hope is that this information will reveal new insights and improve diagnosis and treatment, and answer the troubling questions described above.

To understand the complex genetics of epilepsy, researchers need to enroll 1,500 pairs of siblings (i.e. brothers and sisters) or parent/child pairs (i.e. mother or father and son or daughter) who both have epilepsy not due to a known reason (like stroke, head injury, or brain infection). The study is also enrolling 750 participants who have seizures due to Infantile Spasms, Lennox-Gastaut Syndrome, polymicrogyria, or periventricular heterotopias. For this second group of people, a sibling with epilepsy is not required, although both biological parents (without epilepsy) are required to participate.  Although the results of the study will apply to many different people with epilepsy, focusing this research effort on very specific types of epilepsy will allow the genetic analysis to be completed faster.

Participating in the study involves donating a blood sample and answering questions about your epilepsy. Numerous safeguards are in place to protect the privacy of participants. Participation does not require travel to a study center, and participants receive a small compensation for their time. 

This study is funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke.  In Arizona and the surrounding Southwest region the study center is Mayo Clinic Arizona .   You do not need to be a Mayo Clinic patient to participate.


If you would like more information, please contact:

Brandy Maschhaupt at 480-342-3009 or maschhaupt.brandy@mayo.edu

OR

EPGP at:
Toll-free phone: 1-888-279-EPGP
Website: www.epgp.org
E-mail: info@epgp.org