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CURE Epilepsy Genetics Initiative

What is the Epilepsy Genetics Initiative?

The Epilepsy Genetics Initiative (EGI) was created by Citizens United for Research in Epilepsy (CURE) to bridge the gap between people with epilepsy, clinicians, and researchers and tailor advances in medical care and decision-making to individual patients. The EGI has created a centralized database to hold and analyze the genetic data of people with epilepsy.

The data (called exome data) will be analyzed until the cause of the person's epilepsy is found. Findings will be reported back to the person's doctor. The data will also be made available to advance research.

How will this help find cures?

Finding the genes that cause epilepsy could lead to cures faster because we'll know the causes of different kinds of epilepsy. By participating in this study, you'll help advance this important research. You also may learn more about the cause of your seizures.

What is an exome, and how is it different from a genome?

Genome sequencing is when every letter of your DNA code is determined. Exome sequencing is when just the letters of your DNA that make up genes are identified.

Who can participate in EGI?

  • Anyone who has been diagnosed with epilepsy and has had a test called exome sequencing can be a part of EGI. This test is ordered by your healthcare provider, usually a neurologist or epileptologist.
  • People of any age and who live anywhere in the world can be a part of EGI.

How do I know if this is right for me?

  • Ask your healthcare provider if you've had exome sequencing done.
  • If you have, you can enroll in the study and your healthcare provider can send in the results.

Can I enroll now? How do I enroll?

You can enroll now! There are 2 ways to enroll in the study:

In Person

You may enroll at any one of the EGI enrollment sites listed below:

  • Ann & Robert H. Lurie Children's Hospital of Chicago
  • Boston Children's Hospital
  • Columbia University
  • New York University Medical Center
  • Children's Hospital of Colorado
  • The Children's Hospital of Philadelphia
  • University of Iowa Children's Hospital
  • The University of Melbourne in Australia
  • University of California San Francisco
  • Mayo Clinic (Rochester, MN)
  • Oklahoma Children's Hospital
  • Children's National Hospital
  • Royal College of Surgeons in Ireland
  • University of Bologna in Italy

Enroll Remotely

You can still participate if you don't live near one of the EGI sites.

  • Enroll remotely and your health care provider can work with the EGI Team on how to help.
  • Contact EGI for more information at EGI@CUREepilepsy.org.

Download the handout and bring it to your doctor or other health care provider. Talk about if the EGI is right for you.