ABOUT PERC
We are an epilepsy nonprofit dedicated to collegial and collaborative research
to improve the lives of children living with epilepsy everywhere.
OUR VISION
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
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. Our consortium consists of more than 90 U.S. pediatric epilepsy centers and over 450 pediatric epileptologists, pediatric neurosurgeons, psychologists, and other pediatric epilepsy researchers.
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’s 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.
PERC is quickly becoming the platform for research that will define the best available diagnostic and treatment practices in all of pediatric epilepsy. The solution to curing childhood epilepsies and preventing the adverse effects associated with them will take time and substantial financial resources. In addition to ongoing research, PERC is committed to developing research capacity for the future by mentoring and developing early and mid-career pediatric epilepsy clinicians and researchers through engagement in our work.
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.
PERC is led by a diverse Board of Directors consisting of nationally-recognized pediatric epileptologists, a psychologist, a clinical research coordinator, pediatric neurosurgeon, and a person with epilepsy, in addition to its Executive Director. The Executive Director began full-time employment in December of 2022. As PERC builds financial capacity, we plan to add additional staff supporting the infrastructure necessary to manage multi-center research across our 17 special interest groups.
PERC is incredibly grateful to the following pediatric epilepsy clinicians and researchers who invested considerable time and energy over the past decade to create and establish PERC as the leader in pediatric epilepsy research. PERC would not exist without their tireless efforts!
FORMER PERC Steering Committee and Board MEMBERS
(currently not on the PERC Board)
Sucheta Joshi- Children’s Hospital Los Angeles
Kate Nickels- Mayo Clinic
Anup Patel- Nationwide Children’s Hospital, Ohio State University College of Medicine
Zach Grinspan- Weill Cornell Medical Center, NYC
Joseph Sullivan- UCSF (San Francisco)
Kelly Knupp- University of Colorado
Renée Shellhaas- Washington University of St Louis
Anne Berg- Northwestern
Dennis Dlugos- Children's Hospital of Philadelphia
Elaine Wirrell- Mayo Clinic
Bios
-
Item descriptioAnup Patel, M.D. is board certified in neurology with special qualifications in child neurology. In addition, he is board certified in epilepsy and clinical neurophysiology.
He is the President-Elect for the Child Neurology Foundation. He is the section chief of neurology and director of epilepsy at Nationwide Children’s Hospital. He is an associate professor for neurology and pediatrics at Nationwide Children’s Hospital and The Ohio State University Medical Center in Columbus, Ohio.
He has journal publications and clinical research interests in the field of pediatric epilepsy, health care utilization, learning healthcare systems, and quality improvement.n
-
The research interests of Katherine C. Nickels, M.D., involve identifying preferred evaluation and treatment of early-onset epilepsy syndromes, finding novel pharmacologic treatment of pediatric epilepsy, and studying long-term outcomes of pediatric epilepsy. Regarding diagnosis, treatment and outcome of pediatric epilepsy, Dr. Nickels' research experience includes multiple epidemiology studies using the Rochester Epidemiology Project.
Through the Pediatric Epilepsy Research Consortium (PERC), Dr. Nickels collaborates with pediatric epilepsy specialists throughout the United States to determine best practices and treatments for early-onset pediatric epilepsy encephalopathies. In these studies, particular attention is given to infantile spasms, commonly called West syndrome, and myoclonic atonic epilepsy, also known as Doose syndrome.
-
Dr. Zachary Grinspan is the Interim Chief of Child Neurology and Director of the Pediatric Epilepsy Program at Weill Cornell Medicine and the NewYork-Presbyterian Komansky Children's Hospital at Weill Cornell Medical Center. He is an Associate Professor in Pediatrics and in Population Health Sciences, and holds a Masters of Science in Biostatistics. He is also a Nanette Laitman Clinical Scholar at Weill Cornell Medicine.
Dr. Grinspan received his undergraduate degree from Yale University and his medical degree from Albert Einstein College of Medicine of Yeshiva University. He completed a residency in Pediatrics at the Mass General Hospital for Children in Boston, a residency in child neurology at Columbia University Medical Center in New York City, and a fellowship in Clinical Neurophysiology at Montefiore Medical Center in the Bronx in 2011. He then completed a post-doctoral research program in quality of care and clinical informatics at Weill Cornell Medicine, funded through the National Institutes of Health Neurologic Science Academic Development Award (NIH K12 NSADA). He is board certified in Pediatrics and Neurology with Special Qualification in Child Neurology.
A national leader in pediatric epilepsy research, he has more than 100 published research articles including collaborations with international experts across multiple disciplines (epilepsy, emergency medicine, critical care, health services research, informatics, biostatistics, machine learning, engineering, and economics). He leads several large multi-centered research projects supported including a CDC funded study of the epidemiology of rare epilepsies in New York City, a 25-center grant to build a national learning healthcare system for pediatric epilepsy, and an NIH study to study seizures in newborns.
-
Renée Shellhaas, MD, MS, was named associate dean for faculty promotions and career development in 2022. Dr. Shellhaas, the David T. Blasingame Professor of Neurology, came to the school from the University of Michigan, where she was an associate chair for career development and a pediatric neurology clinician-investigator.
In this position, Dr. Shellhaas will work with the School of Medicine’s leadership team to develop innovative institutional programming aimed at improving faculty career development, including the promotion and tenure process. She will explore new ways to bring coaching, management and leadership training programs to the school’s departments, institutes and divisions.
Dr. Shellhaas’ research focus is neonatal neurology and early-life epilepsy, including approaches to seizure detection, improved treatment paradigms and prediction of long-term outcomes for affected infants. She is also a leader in studies of sleep and sleep-disordered breathing and their impact on neurodevelopment in high-risk newborns, for which she was awarded the Sleep Science Award by the American Academy of Neurology.
She has published extensively and is a principal investigator for two active R01 grants from the National Institutes of Health (NIH). She has served as associate editor of the journal Neurology, and continues on the editorial boards of the Journal of Child Neurology, Pediatric Neurology, and Annals of the Child Neurology Society. Earlier this summer, she was appointed president-elect of the Pediatric Epilepsy Research Foundation®.
In addition to her leadership roles at the University of Michigan and in multiple professional organizations, Dr. Shellhaas has been elected a member of the American Pediatric Society and Society for Pediatric Research, and a fellow of the American Epilepsy Society. Further, she has a strong track record of mentoring and teaching; she received the inaugural Chair’s Award for Outstanding Mentorship from the Department of Pediatrics at the University of Michigan.
Dr. Shellhaas is a graduate of Middlebury College and the University of Michigan Medical School. She trained in pediatrics, neurology/child neurology, and clinical neurophysiology at the Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania. She joined the faculty at Michigan in 2007, and was promoted to professor in 2019 and into career development leadership in 2020. She also completed a master’s degree in clinical research design and statistical analysis at the University of Michigan’s School of Public Health in 2009.
-
Dennis J. Dlugos, MD, MSCE, is a professor of neurology and pediatrics at Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania School of Medicine. He is Director of the Section of Clinical Neurophysiology and the Epilepsy/Clinical Neurophysiology Fellowship. He holds the Tristram C. Colket, Jr. Endowed Chair in Pediatric Neurology.
Dr. Dlugos obtained his medical degree at Columbia University College of Physician and Surgeons in 1988, and a Master of Science Degree in Clinical Epidemiology (MSCE) from the Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania School of Medicine in 2002. He completed an internship in Pediatrics at the National Naval Medical Center in Bethesda, Maryland, in 1989, and served as an Undersea Medical Officer in the U.S. Navy from 1989 to 1993. He then completed a residency in Pediatrics at Thomas Jefferson University and Alfred I. duPont Institute in Philadelphia, Pennsylvania, and Wilmington, Delaware. Dr. Dlugos then completed a residency in Neurology/Child Neurology and a fellowship in Epilepsy and Clinical Neurophysiology at the University of Pennsylvania Medical Center and The Children’s Hospital of Philadelphia.
Dr. Dlugos is board certified in Neurology with special qualifications in Child Neurology, Pediatrics, Clinical Neurophysiology, and Clinical Neurophysiology with special qualifications in Epilepsy Monitoring. Dr. Dlugos is a co-investigator on NIH grants involving epilepsy genetics, pharmacogenetics, and epilepsy surgery. Dr. Dlugos is course director of Brain and Behavior, a 9-week Clinical Neuroscience course in the University of Pennsylvania School of Medicine curriculum.
Dr. Dlugos is a member of the American Academy of Pediatrics, the American Academy of Neurology, the American Epilepsy Society, the American Clinical Neurophysiology Society, and the Child Neurology Society. Dr. Dlugos is a frequent lecturer locally and at national medical meetings on topics related to pediatric neurology, epilepsy, and electroencephalograms. He has published papers in journals such as Neurology, Epilepsia, Archives of Neurology, Pediatric Neurology, and Journal of Child Neurology.
-
Kelly Knupp is an Associate Professor of Pediatrics and Neurology at the University of Colorado. She received her medical degree from the University of New Mexico – School of Medicine, completed her residency in Pediatrics at Children’s Hospital of New York followed by Pediatric Neurology Residency at Columbia University at Children’s Hospital of New York. After her residency, she trained as a Clinical Fellow in Pediatric Epilepsy at the Columbia Comprehensive Epilepsy Center at New York Presbyterian Hospital.
Dr. Knupp now practices at Children’s Hospital Colorado in Aurora, CO. and is the Associate Research Director of Neuroscience Institute and Director of the Dravet Program. Her interests are epileptic encephalopathies including Dravet Syndrome and infantile spasms. She was a founding member of the Pediatric Epilepsy Research Consortium and continues on the steering committee. This group focuses on developing collaborative research across the country for children with epileptic encephalopathies. She also serves on the medical advisory boards of the Epilepsy Foundation of Colorado, Round up River Ranch and the Dravet Syndrome Foundation.
-
Dr. Joseph Sullivan, a pediatric neurologist, serves as director of the UCSF Pediatric Epilepsy Center, where he specializes in evaluating and caring for children with epilepsy, particularly refractory epilepsy (in which medications fail to control seizures). He has special interests in Dravet syndrome and PCDH19-related epilepsy (two genetic forms of the condition) as well as in evaluating children for epilepsy surgery.
Sullivan earned his medical degree at Albany Medical College. He completed a residency in pediatrics and served an additional year as chief resident at Ann & Robert H. Lurie Children's Hospital of Chicago, part of Northwestern Medicine. At Children's Hospital of Philadelphia, he completed a residency in child neurology and a fellowship in epilepsy and clinical neurophysiology. He joined the UCSF faculty in 2007.
Sullivan is a member of the American Epilepsy Society and serves on boards for several organizations. His roles include chair of the PCDH19 Alliance's scientific advisory board, member of the Epilepsy Foundation of Northern California's board of directors, and member of the Dravet Syndrome Foundation's medical advisory board and board of directors.
-
The focus of my research for over 30 years has been the "natural" history of pediatric seizures and epilepsy with a specific emphasis on seizure outcomes, developmental and cognitive consequences the impact on quality of life, impact on families, and the implications of all of these considerations for care and care-models. In 2007, I played a key role in focusing NINDS research priorities on the cognitive, developmental, and behavioral co-morbidities of epilepsy and organized sessions at the American Epilepsy Society meeting to investigate these areas and identify research opportunities for improving patients’ outcomes. In 2013, I Co-Chaired the NINDS-sponsored Curing Epilepsies conference and also organized and led the workshop, “Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today. I was one of the initial founders of the Pediatric Epilepsy Research Consortium (PERC) which has grown to over 40 centers in the US. My current work centers on developing resources and means to facilitate rapid, collection of high-value information about the abilities and impairments in a large range of domains affected by developmental brain disorders and early life epilepsies. The parent-caregiver voice in identifying research priorities and directing investigations is a cetral component to these effprts. A driving force behind my research endeavors is to develop and use evidence to transform attitudes and approaches toward early life epilepsy from one of futility to one in which precision diagnosis can lead to precision therapies and ultimately to improved outcome for the affected indivdual, the family, and society as a whole.
-
Dr. Elaine Wirrell is the Chair of Child Neurology and Professor of Neurology at the Mayo Clinic in Rochester, Minnesota. She completed medical school at the University of British Columbia and her pediatric neurology training at Dalhousie University in Halifax, Nova Scotia.
She is the co-chair of the Pediatric Medical Therapies Task Force and a member of the Pediatric Commission of the International League Against Epilepsy. She is also a member of the Medical Advisory Board for the Dravet Syndrome Foundation and the Lennox Gastaut Foundation.
Dr. Wirrell’s main research interests are in early onset, medically intractable epilepsies, and epileptic encephalopathies.