TSC Matters

Archive for January, 2023

TSC Matters is a bimonthly e-newsletter featuring news from the TS Alliance, TSC research updates, upcoming TS Alliance events and more! Subscribe to stay up-to-date on everything happening at the TS Alliance.

Participate in the TSC Self-Report Portal – New Survey Available

The TSC Alliance has created a Self-Report Portal (SRP) to collect information called Patient-Reported Outcomes (PROs). PROs are any report of the status of a person’s health condition that comes directly from the person, without interpretation of the person’s response by a clinician or anyone else. In the case of individuals with TSC that are unable to speak or report for themselves, PROs can be submitted by their parent, guardian, or caregiver. The TSC Alliance is collecting information from caregivers of individuals with TSC that have epilepsy. The goal is to evaluate the relationship between epilepsy and TSC Associated Neuropsychiatric...Read More

Participants Needed for a Study Using AI to Predict the Onset of Seizures

Do you or your loved one suffer from uncontrolled epileptic seizures? Using Artificial Intelligence, scientists at Florida International University are working on a non-invasive solution that could predict the onset of a seizure and improve the quality of life of patients and their families. The FIU research team would like to speak with you to collect information on how they can improve the quality of your life with their technology.Read More