Description:

The Global Pediatric Epilepsy Surgery is the first patient-powered registry to track the developmental trajectory after pediatric epilepsy surgery in childhood. Dr. Aria Fallah, registry advisory board member, and Monika Jones, principal investigator, will provide the first complete community report from the registry.

To learn more about the registry, go to www.epilepsyregistry.org.

About Dr. Fallah:

Dr. Aria Fallah’s expertise and research interests are in Evidence Based Surgery, Clinical Trials, Observational Studies and Meta-Analyses as it relates to clinical and operative Pediatric Epilepsy Surgery. His current research projects include large international studies to generate and validate a prognostic tools, comparative effectiveness and data-synthesis in pediatric epilepsy surgery. He is also involved in randomized clinical trials in epilepsy surgery.

Dr. Fallah is a member of the registry advisory board for the Global Pediatric Epilepsy Surgery Registry.

About Monika Jones:

Monika Jones is founder and Executive Director of the Pediatric Epilepsy Surgery Alliance. Her first son, Henry, was born with total hemimegalencephaly – a rare unilateral brain malformation which caused him to have hundreds of seizures per day shortly after birth. The seizures included infantile spasms, a catastrophic epilepsy which can result in profound intellectual and motor impairment if not stopped early. Henry required multiple hemispheric surgeries, the first at three months old.

Ms. Jones is the principal investigator of the Global Pediatric Epilepsy Surgery Registry – a prospective and retrospective study, powered by parents of children with epilepsy, to better understand the developmental trajectory after surgery. She was the project lead for the award from the Patient Centered Outcomes Research Institute for the innovative 2019 stakeholder meeting to better understand the functional implications of large resective and disconnective epilepsy surgeries.