Why should my family participate in the registry?

  • To partner with researchers interested in rare genetic forms of epilepsies and to understand them better.
  • To develop studies of rare genetic epilepsies to find better treatment options.
  • To get up to date information on rare genetic forms of epilepsy.
  • To be informed about new research projects that could benefit families with epilepsy.

How it works

  • Any person with epilepsy that has a genetic cause can enroll in the Registry.
  • To enroll, you only need to answer a short survey that takes less than five 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 by clicking here.
  • As research projects emerge, the Registry will email you information.
  • You decide whether any study is a good fit for you and whether you want to participate.

What is done with my data? Will it be safe?

The registry is managed by a committee of scientists, the Steering Committee. When studies arise, the registry will send out an email asking you if you are interested in the study. If you reply that you are interested, then you will be provided with information to enable you to contact the study team directly. The registry will never share your information with anyone. 

Find out more about the registry by clicking the links below: