The TESS registry includes a consent form for you to read and sign, and then collects basic information including your loved one’s diagnosis, age, gender, and geography. This will take 5 minutes. Please have your loved one’s genetic report available in a digital format. If your report isn’t in a digital format, please either take a photo or scan the pages of your loved one’s physical genetic report. When you upload the genetic report to the registry, our team will analyze your loved one’s unique genetic mutation.

Benefits to registrants include:

• Joining a Research Network gathering patient information toward understanding SLC13A5 Epilepsy.
• Keeping you up-to-date on the latest information regarding SLC13A5 Epilepsy.
• Staying informed about opportunities to participate in research and clinical trials.
• Receiving family meeting invitations, special mailings, and information regarding any discoveries about SLC13A5 Epilepsy that would impact care decisions.

If you have questions, TESS will help you every step of the way. Contact info@tessfoundation.org.