Global Genomic Epilepsy Registry Information Form

Before deciding whether to participate, read the information on this page so you know what the registry involves.

What is the Registry

Epilepsy doctors and researchers around the world have created a Global Genomic Epilepsy Registry.

Purpose

The registry links people with epilepsy with researchers. By linking patients and researchers together, we hope that successful research studies will lead to new treatments for people with epilepsy.

How it Works

A person with epilepsy with a genetic cause (or their legally authorized representative) can enroll in the Global Registry.

If you decide to participate in the Global Registry, you will be asked 15 questions: contact information, information about the epilepsy and gene, and how you found the Global Registry. Filling out the registry form takes less than 5 minutes.

Once enrolled, you will receive a quarterly newsletter describing new studies, patient organizations, and other news. You can cancel the newsletter or withdraw from the Registry at any time. 

Using the Registry

The Registry is managed by a committee of scientists, the Steering Committee. These scientists and their colleagues may conduct future research studies about epilepsy that you or your family member may be eligible to participate in. When studies arise, the Registry will send out an email describing the study and asking you if you are interested in possibly participating in the study.

The Registry will never share your information with anyone.

Questions

If you have questions before you decide, contact the study team.