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 Disorders (TAND), through the TAND Self Quantifiable (TAND SQ) checklist and other questions specific to epilepsy care. The TSC Alliance has incorporated a questionnaire into the Self-Report Portal and seeks participants to complete the checklist through the portal.
You may participate regardless of participation in other TSC Alliance studies. If you are interested in participating in this project, please email biosample@tscalliance.org.