Project Description


When launched, our global pediatric epilepsy surgery registry will be the first of its kind to help researchers access large cohorts of children to drive research on motor, cognitive, behavioral, sensory, and medical issues after resective and disconnective epilepsy surgeries.

Target number of participants in our patient registry
Approximate number of hemispherectomy surgeries performed in the U.S. per year

It has been fourteen years since the 2003 meeting of the Pediatric Epilepsy Surgery Subcommission of the International League Against Epilepsy, where participants addressed criteria for referral and evaluation of children for epilepsy surgery. In that very important meeting, there was a call for more research addressing functional outcomes. Sadly, few functional outcome studies have been published since then.

We aim to change that. In mid-2017, pending institutional review board approval, we will launch the world’s first pediatric epilepsy surgery patient registry in the REDCap platform. This will help you – the researcher – access the thousands of pediatric epilepsy surgery patients worldwide to initiate your studies of the functional implications of various epilepsy surgeries.

Epilepsy surgery is not a last resort, but there remains a delay to surgery for many children. This is, we believe, in part due to the lack of understanding of functional outcomes; there remains a paucity of research on the functional implications of epilepsy surgery, especially the large resective and disconnective procedures like hemispherectomy.  With your help, we can better understand the implications of epilepsy surgery to help parents make a well-informed decision on behalf of their child.

MONIKA JONES • CEO, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation