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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 1,000 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.
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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 Family Member and Get Access to the SCN8A Registry Questionnaire
1

Family Membership Form

If you are a caregiver or patient, please fill out the Verified Family Membership Form. If you don’t have your SCN8A mutation information, please contact us at scn8a.info@gmail.com.

2

Email Notification

Once you have submitted the Membership Form, you will receive an email notification indicating your membership status.

3

Participating in the SCN8A Registry Questionnaire

Click the “Go to Registry Questionnaire” button to get to the RedCap SCN8A Registry Questionnaire. The first page is a Consenting Statement. If you agree with the Consenting Statement, click “Agree” and you will be taken to the Registry Questionnaire. Fill out the questionnaire and help us reach our goal of registering 1,000 participants. Contact us at scn8a.info@gmail.com with any questions.

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