SCN8A Registry FAQ

1. Is the site fully functional? What remains to be in place, if not?

The website is currently fully functional. As we move forward we are constantly looking for ways to improve your experience on the site. Therefore we will have many website updates as time goes on that will add exciting new features.

2. What are the privacy assurances in place? What information will be shared and how is it protected?

Approved by the Human Subjects Committee, the website is designed by our informatics team at the University of the Arizona to collect medical information in an extremely secure manner. Only those individuals associated with the project will have access to the name of the family supplying the information. Any data that will be used for research will be completely anonymous and your identity will not be released to anyone without your specific permission.

3. How is access to the parent forum granted?

The parent forum is accessed once an individual signs up for membership at the SCN8A website. The membership form includes contact information and importantly, the specific SCN8A mutation that the family member has to ensure that only parents/caregivers are given access to the private sections. In the forum some topics are listed as public while many of the more private threads are restricted to registered members.

4. Who is moderating the forum?

Currently there is no single moderator. Michael and Alixx check the forum frequently to keep an eye out for any questions or new threads. However, moving forward Alixx will play a larger role in moderating topics in the forum, and we will likely request volunteers to help us.

5. What is the SCN8A Registry?

The 8A Registry is a patient-centered repository of information collected directly from families via a well-designed questionnaire that is specific for SCN8A-related symptoms. Only members are allowed to enter the Registry and given access to the questionnaire. The questionnaire is the vehicle for collecting large amounts of important information about your child, which will be analyzed by our team to learn about SCN8A-related epilepsy.

6. What information is needed to fill out the questionnaire and how long does it take?

The questionnaire should take about 2-3 hours to fill out. You will be asked to provide information on your child’s clinical features, developmental history, and medications. You also will be asked to upload your child’s genetic report, as well as doctor reports including MRI brain scans and EEGs.

7. What will happen to the data that I enter into the Registry?

Researchers will analyze data from the registry to accelerate progress in understanding the causes and consequences of SCN8A epilepsy. Important information gleaned from the 8A Registry will be made available on the SCN8A Website to keep you, your doctors and other researchers appraised of the latest findings.

8. What are the benefits of becoming a member and filling out the questionnaire in the Registry?

By taking take part in the 8A Registry, you will learn of others who share the same mutation and who have similar clinical features. 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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This page was last modified on: 12/13/2015 2:14:19 AM