Frequently Asked Questions
What is EPGP?
The Epilepsy Phenome/Genome Project (EPGP) is a research study funded by the National Institutes of Neurological Disorders and Stroke. The goals are to better understand what causes epilepsy, why some families have several people with epilepsy, and how we can better predict which anti-seizure medications (or no medication) will work best for an individual.
Who is eligible to participate?
EPGP is looking for two types of participants:
1. A person with epilepsy who also has a brother or sister with epilepsy. Both siblings will be asked to participate in the study.
2. A person with epilepsy due to infantile spasms, Lennox-Gastaut Syndrome, polymicrogyria, or periventricular heterotopias. Both biological parents will be asked to participate (they do not need to have epilepsy).
What does participation require?
Participation requires providing a blood sample, answering interview questions, and allowing researchers to review medical records.
Where do participants have to go?
Participation can be done through the phone and mail, and so a visit to a clinical center is not required.
How long does participation take?
Participation will take about 2 to 4 hours.
Where is EPGP taking place?
The study is taking place at major epilepsy centers in the US and Australia. Click here to find a clinical center, although participation does not require travel to a center.
How many people will be participating?
The study will enroll 3000 people who are siblings with epilepsy, and 2,250 people who have infantile spasms, Lennox-Gastaut Syndrome, polymicrogyria, or periventricular heterotopias (or their parents).
Who are the key personnel involved in the study?
The principal investigators are Daniel Lowenstein, MD of the University of California, San Francisco and Ruben Kuzniecky, MD of New York University School of Medicine.
Where can I get more information?
For more information on the study, contact info@epgp.org or call us toll free at 1-888-279-EPGP (1-888-279-3747).