Epilepsy will impact 1 in 26 people throughout their lifetime. While epilepsy is common, the reasons, treatments, outcomes and associated complications vary widely between individuals.
A prospective study of all early life epilepsies focused on their evaluations, diagnoses, treatments, and early outcomes. Children from birth to 3 years of age with new onset epilepsy were followed prospectively for one year.
In 2012, The Pediatric Epilepsy Research Consortium developed the National Infantile Spasms Consortium (NISC) database, which is a multicenter database enrolling children prospectively. Children with new onset infantile spasms between 2 months and 2 years of age were eligible for enrollment. Clinical information was collected at the time of diagnosis and 3 months after diagnosis. Treatment decisions for individual children were made by the treating clinician.
The Pediatric Epilepsy Learning Healthcare System (PELHS) collects electronic health information from multiple sites and disseminates analyses to change practice and continuously improve outcomes for children with epilepsy. PELHS is a project affiliated with the Pediatric Epilepsy Research Consortium.
The Pediatric Epilepsy Surgery Database is a prospective cross sectional study enrolling patients undergoing epilepsy surgery evaluation at 20 US pediatric epilepsy centers.