PELHS received a generous grant from The BAND Foundation to study mortality in children with epilepsy. Twenty of our centers will review mortality from 2015-2020 to identify preventable causes of death in children with epilepsy.
Dr. Anup Patel, leadership core, and Amy Zampi, parent representative, presented at the DEE-P Connections webinar, “Improving the Quality of Rare Childhood Epilepsy Care,” on the ways PELHS is improving the quality of epilepsy care for those with severe developmental and epileptic enchephalopathies (DEEs).
At the 73rd annual meeting of the American Epilepsy Society, Dr. Zachary Grinspan, director of PELHS, discussed the results of a study examining the rates of patients with infantile spasms who received recommended care and how health data monitoring and education efforts can help improve the compliance rate in first-line therapy.
PELHS was profiled by NewYork-Presbyterian on its innovative approach to reduce seizures and their consequences for children with epilepsy. Dr. Zachary Grinspan, director of PELHS, detailed the consortium’s three domains of inquiry: quality improvement research, observational comparative effectiveness research, and surveillance and epidemiology.
Design and implementation of electronic health record common data elements for pediatric epilepsy: Foundations for a learning health care system
In a study published in Epilepsia, researchers created, piloted, refined, finalized, and implemented a novel set of clinical common data elements (CDEs) for pediatric epilepsy. While different electronic health record systems are likely to have different data formats, naming conventions, and data tables, CDEs use standardized questions and answer choices that allow aggregation, analysis, and comparison of observations from multiple sources. Effective CDEs could be useful in creating a learning health care system that is both data and information rich.