Before we launched our patient registry, our community learned about a child’s epilepsy surgery journey from social media posts or in conversations we shared with each other in person, such as during our family conferences. Now, the Global Pediatric Epilepsy Surgery Registry gives families a powerful platform where they can share their child’s developmental journey in a scientific and data-driven way.
When researchers analyze data in our registry or publish scientific papers about the results, they can make better decisions, plan better research projects, predict outcomes, and counsel families better throughout the child’s lifespan.
About this report
This first data report reflects data collected from February 2019 – June 30, 2020. It provides an overview of some – not all – of the data in the registry. Future registry reports will break down the data further and better. It will answer deeper questions, such as:
- What percentage of children with cortical dysplasia who had infantile spasms go on to speak after hemispherectomy surgery?
- Does side of surgery or age at time of surgery make a difference?
- What percentage of children who have laser ablation as the first surgery require reoperation?
Our deepest gratitude to every single person who has participated in the registry so far. By contributing your data, our registry has unparalleled value. Your dedication to scientific research drives our mission to help all children reach their full potential after epilepsy surgery.
Monika Jones, JD, CNP, Registry Principle Investigator • Biostatistician: Klajdi Puka, PhD(c) • Data Specialist: Hillary Gooris
Registry Advisory Board
Solomon L. Moshe, MD, Chief, Pediatric Neurology, Children’s Hospital at Montfiore; Aria Fallah, MD, MS, Director of Pediatric Neurosurgery, UCLA Mattel Children’s Hospital; Lynn Paul, PhD, Director, Caltech Psychological Assessment for Research Lab; Cynthia Menard, MD, FDCPC, Clinical Cancer. Research Unit, Princess Margaret Cancer Centre; Remy Chu, Jr. MHA, OTR/L, CBIS, Inpatient Clinical Manager at Rancho Los Amigos National Rehabilitation Center
To learn more about the registry and how you can participate, go to www.epilepsyregistry.org
· Click the full screen icon on the bottom right before you view the registry ·