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