Welcome to the SCN8A Registry

What is the SCN8A registry?

The SCN8A Registry is a patient-centered repository of information collected directly from families via a well-designed SCN8A-specific questionnaire. To advance SCN8A research, we are working to register 1000 participants and keep track of all medical, developmental, and genetic information in a securely held data storage system designed to protect your privacy.

Why Should I Participate?

By taking part in the SCN8A registry, you will learn of others who share the same mutation and/or similar clinical features, and at the same time you will be helping the next generation of children and their families connect to our community, which is growing in numbers and its knowledge of SCN8A.

It is critical that we all participate to gather as much data as possible. It is only through the accumulation of large amounts of data that we will be able to provide a complete description of the variety of symptoms that affect our children, and to achieve statistical significance on our analyses.

What Happens to My Data?

Researchers will analyze data from the registry to accelerate progress in understanding the causes and consequences of SCN8A epilepsy. Important information gleaned from the SCN8A Registry will be made available on the SCN8A Website to keep you, your doctors and other researchers informed of the latest findings.

How to Become a Participant in the SCN8A Registry

For Families


Membership Form

If you are a patient, please fill out the Membership Form to get access to the private sections of the Website and the Family Forum. This will also allow families with members suffering from SCN8A-related disorders to get access to the SCN8A Registry. Once you have submitted the Membership Form, you will receive an email notification indicating your membership status.



Log in and you will be able to see the Research Consent form. If you agree with the Consenting Statement, click “Agree” and you will be taken to the Registry Questionnaire.


Filling out the Questionnaire

Fill out the questionnaire and help us reach our goal of registering 1000 participants. Contact us at scn8a.info@gmail.com with any questions.

Do not have an account? Sign up!

The Registry has been made possible with the generous financial support of the Wishes for Elliott Foundation, The Cute Syndrome Foundation, and the CB2 group at the University of Arizona.