The main purpose of the Global Pediatric Epilepsy Surgery Registry (GPESR) is to collect and analyze epilepsy surgery patient data to enhance the understanding of long-term outcomes of epilepsy surgery. The Registry will also help connect Registry participants with research studies for which they may be eligible.
The GPESR will advance pediatric epilepsy surgery research faster than ever before. The Registry will:
- Provide a convenient, online platform for patients and their families to share their experiences with pediatric epilepsy surgery;
- Describe the pediatric epilepsy surgery population as a whole in ways that have never been done before, focusing on both personal patient/family stories and more traditional clinical outcomes;
- Accelerate and facilitate the planning research studies by helping researchers to locate potential research participants quickly and efficiently as well as generate hypotheses for future studies;
- Assist the pediatric epilepsy surgery clinical community with the development of recommendations and standards of care;
- Be a resource to be used by researchers who seek to study all aspects of pediatric epilepsy surgery, underlying causes, evaluation of long term motor, sensory, behavioral, cognitive, educational, and psycho-social outcomes;
- Assist with the development of patient-centered outcomes to be used in future research studies; and
- Allow The Brain Recovery Project to provide epilepsy surgery patients and their families with regular feedback on the Registry which will translate to real-time educational and advocacy opportunities and improve experiences and outcomes of epilepsy surgery families in the future.