Meet & Greet: Pediatric Epilepsy Research Consortium

M. Scott Perry, MD

In late October, NeurologyLive welcomed the Pediatric Epilepsy Research Consortium (PERC) as a new partner to the platform. The organization, which aims to be the "gold standard" for pediatric epilepsy care, comprises over 77 epilepsy centers across the U.S. and involves more than 375 clinicians, including pediatric epileptologists, neurosurgeons, and neuropsychologists.

As an introduction to the new partnership, NeurologyLive® sat down with M. Scott Perry, MD, an expert in epileptic disorders and board president of PERC. Perry, who serves as an epileptologist and head of neurosciences at Cook Children's Hospital, provided insights on the mission and goals of the organization, organizational structure and membership, and notable ongoing research projects, for which there are over 60 active. In addition, he provided insight on the funding and infrastructure of the group, as well as how it fosters collaboration and where it provides resources to connect researchers with shared interests.

NeurologyLive: How was PERC founded and created? Give some background on its origins.

Scott Perry, MD: The Pediatric Epilepsy Research Consortium was founded in 2010 when pediatric epileptologists, Drs. Elaine Wirrell and Kelly Knupp, invited 13 centers to have a discussion about collaborating on research. From this discussion, two research studies were started: one on early life epilepsy, and the other on infantile spasms. Later, these research groups started to mobilize and organize the United States’ pediatric epilepsy centers into a network built around collaborative research, their purpose to define and deliver the best possible care to children with early life epilepsies and then to improve that care through practice-changing research.

PERC’s initial research initiatives represented simple descriptive studies to capture the current practices for diagnosis and treatment of early life epilepsies, with a special emphasis on infantile spasms. These initial studies are still providing an unprecedented understanding of the best practices surrounding these difficult-to-treat epilepsies. It was clear after these initial studies that collaborative research had immense impact and could be carried out if the essential infrastructure to promote collaboration was in place. It was at this time that PERC set out to become the platform for research that defines the best available diagnostic and treatment practices in all of pediatric epilepsy. PERC is committed to developing research capacity for the future by mentoring and developing early and mid-career pediatric epilepsy clinicians and researchers and providing them a venue for collaboration and support services to make their research successful.

PERC was funded in the early years by the American Epilepsy Society through an infrastructure grant, in addition to grants from the Pediatric Epilepsy Research Foundation (PERF). PERC was a nonprofit under the umbrella of the Colorado Nonprofit Development Center (CNDC), who acted as PERC’s fiscal sponsor.

In 2022, PERC received a generous infrastructure grant from the Pediatric Epilepsy Research Foundation (PERF) to hire its first Executive Director, with the intention of becoming an independent 501(c)3 organization, expanding its reach and impact. PERC became an independent 501(c)3 organization in October of 2023, allowing the consortium to build upon its founding goals. PERC remains grateful to the American Epilepsy Society (AES) for years of financial support and for providing complimentary meeting spaces at the AES Annual Meeting for PERC members to gather and collaborate with one another.

What are some of the missions and goals of the organization?

Our vision is a world in which all children with epilepsy benefit from the most recent advances in scientific knowledge and technology, regardless of geographic or economic resources.

Currently our research is distributed across four key areas:

• Surveys
• Literature and Scoping Reviews
• Database building and extraction
• Creating treatment guidelines through Delphi Consensus and other processes

We hope to identify preferred diagnostic evaluations and treatments for specific epilepsy syndromes, etiologies, and comorbidities. Within five years, we aim to be known as the "gold standard" for pediatric epilepsy care and research.

Our mission is to provide the network and infrastructure to facilitate collegial, collaborative, practice-changing research that will provide answers needed to improve the care of children with epilepsy.

Who comprises PERC? Talk about who is involved, the member institutions, and the clinician base within

Our consortium consists of more than 77 U.S. pediatric epilepsy centers and over 375 pediatric epileptologists, pediatric neurosurgeons, pediatric neuropsychologists, and other pediatric epilepsy researchers. Our membership consists of people directly involved in the care of children with epilepsy, clinicians who see the problems faced by our patients daily and understand better than anyone what and how to address knowledge gaps.

The research of PERC is achieved through 14 Special Interest Groups each focused on an area of unique research ranging from specific epilepsy syndromes, to treatment strategies, to non-seizure outcomes of epilepsy.

PERC is led by a diverse Board of Directors consisting of nationally-recognized pediatric epileptologists, a pediatric neuropsychologist, a clinical research coordinator, and a person with epilepsy, in addition to its Executive Director. The Executive Director began full-time employment in December of 2023 and has a background in non-profit leadership with former employment in the pharmaceutical and medical device industries.

Link to member organizations: Contact 2 — Pediatric Epilepsy Research Consortium (perc-epilepsy.org)

In what ways does the organization foster collaboration for epilepsy research

PERCs 14 Special Interest Groups meet on a regular cadence throughout the year to address knowledge gaps guided by yearly strategic research goals for each group. In addition, PERC holds a yearly retreat in May of each year to set the goals of the organization followed by meeting at the American Epilepsy Society.

Through PERCs member services, the organization is able to match clinicians and researchers with common interests to foster collaboration and foster new ideas. By providing infrastructure to support project startup, PERC helps expedite projects from concept to completion.

PERC also seeks to support young members early in their careers through mentoring services and opportunities to collaborate with experienced researchers from a wide range of institutions.

Are there any notable ongoing research projects the clinician community should be aware of?

PERC has ongoing research numbering >60 active projects across 14 special interest groups. Some examples of those projects include the Lennox Gastaut syndrome consensus project – a Delphi consensus seeking to create standards of care around diagnosis, treatment, and management of seizure and non-seizures manifestations of this condition. The Genetic Epilepsy Database is currently collecting prospective data on children with epilepsy secondary to genetic etiology in an effort to identify substantial cohorts of these often ultra-rare conditions while creating a better natural history understanding of these conditions. The Surgery Database has been collecting data on children evaluated for epilepsy surgery since 2018 and now has >3500 patients in the database offering invaluable information on candidate selection, evaluation strategies, and predictors of outcome. These are just a few of the many meaningful projects ongoing at PERC. More information about our projects can be found within each Special Interest Group’s webpage.