Epilepsy Research: Leading Change Through Multicenter Collaboration

Neuroscience Research | November 1, 2018 | cookchildrens

While a leading institution can produce outstanding research on its own, when multiple leaders in pediatric health care agree to collaborate, the results can be astounding. Funded by the Pediatric Epilepsy Research Foundation (PERF), the Pediatric Epilepsy Research Consortium (PERC) was started in December 2011 and has grown to a national network of 46 pediatric epilepsy centers dedicated to curing epilepsy. Cook Children's Comprehensive Epilepsy Program was the first pediatric epilepsy center in Texas invited to join the group, and our contributions have been substantial, including forming the subsection “investigating pediatric epilepsy surgery in the U.S.”

The goals of the PERC are to 1) develop enduring, national infrastructure for practice-changing research and 2) to create research experiences and opportunities for junior investigators while developing research capacity for the future. The multicenter prospective research conducted by PERC has focused on a number of topics that a single center would take years to investigate, including early onset childhood epilepsy, infantile spasms, Lennox-Gastaut syndrome and other rare epilepsies encountered in the pediatric population.

PERC's research provides novel, contemporary understanding of the use and utility of diagnostic testing, therapeutic options, etiologies and outcomes. There is very little research to guide clinicians in the use of specific drugs and other treatments to achieve seizure control and minimize the impact of seizures on development (Connock, 2006, Brodie 2010, Loscher 2011). PERC aims to identify the characteristics of childhood epilepsy that may affect treatment and outcome in a prospective manner by evaluating the effectiveness of commonly used treatments on seizure control and EEG. This allows for identification of reasonable consensus in treatment approaches, as well as areas of considerable variation, while performing a descriptive study describing the features of children with epilepsy.

Recent publications:

Perry MS. Meaningful results in a jiffy: a PERC of multicenter collaboration. Epilepsy Curr 2016;16(5):299-301.
Knupp KG, et al. Response to second treatment after initial failed treatment in a multicenter prospective infantile spasms cohort. Epilepsia 2016;57(11):1834-42.
Knupp KG, et al. Response to treatment in a prospective national infantile spasms cohort. Ann Neurol 2016;79(3):475-84.
Wirrell E et al. How should children with West syndrome be efficiently and accurately investigated? Results from the National Infantile Spasms Consortium. Epilepsia 2015;56(4):617-25.

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