Pediatric Epilepsy Surgery Conference 2026

Researchers are conducting a first-of-its-kind study to understand the "real world" experience of families navigating the epilepsy surgery journey. While most research happens in doctors' offices, this study focuses on your voice within the patient advocacy community. Your insights will help us identify barriers to care and what matters most to families when making surgical decisions.

Doctors know the medical side of surgery, but you are the expert on your child’s daily life. This registry is a way for parents to share how their children are doing months or years after surgery. By answering a few questions, you help researchers understand how surgery affects things like learning, moving, and long-term health.

Instead of trying to fill out forms on your phone in a noisy hallway, we’ve created a calm space for you to contribute to this important research.

• Total Privacy: We have a dedicated room where you can complete the registry questions away from the crowds.
• Everything is Ready: We provide the iPad and a comfortable place to sit so you can work at your own pace.
  
  

Who can use the room?


Any parent or guardian whose child (age 0 - 18) who has had epilepsy surgery (or is currently being evaluated for it) is welcome to stop by.


Ready to complete the registry now?


You can participate in the registry from the comfort of your own home. All you need is internet access and a compiter, tablet, or smart phone. 

🔗 GET STARTED


Sign-up form coming soon

Our Expo and Resource Fair will be open all day, giving families plenty of time to stop in between sessions, ask questions, and gather practical tools. You’ll meet epilepsy centers, therapy and education professionals, community organizations, researchers, and companies working on treatments and supports for children with drug-resistant epilepsy.

Come to explore at your own pace. Pick up handouts, learn about services and programs, and get connected to resources you can use right away. Whether you’re early in the surgery decision process or navigating life after surgery, the Expo is designed to help you leave with options, answers, and next steps.

Full list of expo resources coming soon! 

Pediatric Epilepsy Surgery Study: Share Your Family’s Journey

Researchers are seeking to understand the "real-world" experiences of families navigating pediatric epilepsy surgery. By gathering perspectives from the patient advocacy community, this study aims to identify barriers to care and uncover what matters most to families when making surgical decisions.

How to Participate: Stop by the UPMC Children's Hospital of Pittsburgh table at the expo to learn more. The questionnaire can be completed online at your convenience, from anywhere.

Take a break and explore the Expo Hall with Expo Bingo. Pick up a bingo card and stroll through the booths, meet exhibitors, and learn about helpful resources. As you visit tables, you’ll collect stamps to complete your card.
Turn in your completed card by the end of the time slot to be entered into a prize drawing. Winners will be selected at random, so not everyone will win, but everyone will leave with new connections and resources.

Researchers are conducting a first-of-its-kind study to understand the "real world" experience of families navigating the epilepsy surgery journey. While most research happens in doctors' offices, this study focuses on your voice within the patient advocacy community. Your insights will help us identify barriers to care and what matters most to families when making surgical decisions.