The main purpose of the registry is to gather information that can be used to understand the developmental trajectory after epilepsy surgery. Researchers can then use the registry to analyze the information, look for changes in a child’s function over time, determine whether some surgical procedures are more effective at stopping seizures than others, recruit participants to their approved studies, and collect new information by adding new questions to the registry.
Your child’s journey matters
The information is used to:
- estimate the number of pediatric epilepsy surgeries performed each year;
- estimate seizure control rates;
- understand reasons for delay to surgical evaluation;
- understand the motor, endocrine, autonomic, cognitive, behavioral, educational, and other functional outcomes after epilepsy surgery; and,
- enhance research that could improve care and education outcomes for all children after epilepsy surgery.