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.