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.
· Click the full screen icon on the bottom right before you view the registry ·
about the author
Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.
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