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.
Meetings
To join a Special Interest Group (SIG), please contact PERC’s Executive Director, Jane Zeender, at janeedperc@gmail.com. In order to join PERC, your institution must be a member, which currently involves the signing of a Memo of Understanding and a commitment from each member institution to actively participate in one or more SIGs. PERC’s Special Interest Groups typically meet via Zoom on a regular basis, in addition to meeting in person at national epilepsy conferences.Special Interest Groups
Early Life Epilepsy Special Interest Group (SIG)
The Early Life Epilepsy SIG is a national group of clinicians and scientists whose mission is to facilitate collaboration on projects to improve our understanding and care of children with early life epilepsy (age of onset < 3 years)
Early Life Epilepsy (ELE) SIG Leaders: Emily Spelbrink, M.D., Stanford Children’s Health, and Krista Eschbach, M.D., Children’s Hospital Colorado
Electrical Status Epilepticus in Sleep Special Interest Group (SIG)
The ESES Special Interest Group (SIG) is a multicenter, collaborative effort to identify the best treatments and outcome measures to improve the care of children with ESES. Given the significant variability in terminology, diagnosis, management, and outcomes in children with ESES, our group aims to reduce the variability in this diagnosis and optimize the outcomes of children with ESES.
ESES SIG Leader: Anthony Fine, M.D., Mayo Clinic
Epilepsy Behavioral Health Special Interest Group (SIG)
The Epilepsy Behavioral Health Special Interest Group (SIG) focuses on psychosocial and behavioral health factors that impact youth with epilepsy.
Behavioral Health SIG Leaders: Shannon Brothers, PhD, Cincinnati Children’s Hospital, and Hillary Kimbley, PhD, Children’s Health
Epilepsy Surgery Special Interest Group (SIG)
The PERC Epilepsy Surgery Interest Group is a network of U.S. pediatric epilepsy centers formed in 2018 to characterize the use of pediatric epilepsy surgery and to investigate evaluation strategies and surgical techniques. The group’s mission is to facilitate collegial, collaborative, practice-changing research that delivers answers needed to improve and define best practices for candidate selection for epilepsy surgery treatment.
Epilepsy Surgery SIG Leader: Adam Ostendorf, M.D., Nationwide Children’s Hospital
Epilepsy with Myoclonic Atonic Seizures Special Interest Group (SIG)
We aim to further elucidate the natural history of EMAS, investigate the current diagnostic and therapeutic milieu, and move toward discovering, evaluating, and implementing the optimal treatments for this disease. This involves developing a comprehensive prospective registry to eventually identify biomarkers for treatment outcomes and also to establish best practices in the care of this epilepsy.
EMAS SIG Leader: Michael Ciliberto, M.D., University of Iowa
Genetics Special Interest Group (SIG)
The Genetics Special Interest Group (SIG) focuses on genetically-mediated epilepsies with an interest in:
1) Identifying and characterizing patients with or without epilepsy who have known or potentially causative variants in genes associated with epilepsy
2) Examining patterns and yield of genetic testing
3) Facilitating multi-institutional collaborative studies into genetic epilepsy
Genetics SIG Leader: John Schreiber, M.D., Children’s National Medical Center
Health Equity Special Interest Group (SIG)
Our Health Equity Special Interest Group (SIG) has two key goals:
1) To determine what is known about health disparities in pediatric epilepsy and identify gaps in knowledge.
2) To develop an agenda of multi-center research projects and recommendations for practice-changing interventions to work towards health equity.
Health Equity SIG Leader: Karen Skjei, M.D., El Paso Center for Seizures in Epilepsy
Infantile Spasms Special Interest Group (SIG)
The Infantile Spasms SIG is a national group of clinicians and scientists whose mission is to facilitate collaboration on projects to improve our understanding and care of children with Infantile Spasms. There are multiple ongoing projects currently underway. These projects include IS biomarker discovery and validation, time to treat IS, ISITT2, IS corpus callosotomy, disparities in treatment of IS, machine learning, and variability in 2nd line treatment of spasms.
Infantile Spasms SIG Leader: Adam Numis, M.D., University of California San Francisco
Lennox-Gastaut Special Interest Group (SIG)
The Lennox-Gastaut Syndrome SIG is a national group of clinicians and scientists whose mission is to facilitate collaboration on projects to improve our understanding and care of children with Lennox-Gastaut Syndrome. We are currently working on an LGS outcomes study and tonic seizure project and are in the early stages of leveraging large databases to identify factors associated with progression from Infantile Spasms to LGS.
Lennox-Gastaut Syndrome (LGS) SIG Leader: Juliet Knowles, M.D., Stanford Children’s Health
Psychogenic Nonepileptic Seizures Special Interest Group (SIG)
The PNES SIG is a national group of multi-disciplinary clinicians and scientists whose mission is to facilitate collaboration on projects to improve our understanding and care of children with PNES.
PNES SIG Leader: Afsaneh Talai, M.D., UT Southwestern Medical Center
Sunflower Syndrome Special Interest Group (SIG)
The Sunflower Syndrome SIG is a national group of clinicians and scientists whose mission is to facilitate collaboration on projects to improve our understanding and care of children with Sunflower Syndrome.
Sunflower Syndrome SIG Leader:Kristina Julich, M.D., UT Austin Dell Medical School
Telemedicine Special Interest Group (SIG)
The tele-health special interest group was formed to investigate the role of tele-health in providing optimal care to children with epilepsy. We aim to elucidate the safety and efficacy of tele-health visits, identify barriers to delivering care through tele-health and pilot novel methods of care delivery through tele-health with emphasis on equity and easy access to care.
Telemedicine SIG Leader: Gogi Kumar, M.D., Dayton Children’s Hospital
Value Based Special Interest Group (SIG)
The Value Based SIG was formed to discover ways to standardize optimal care to children with epilepsy through our tertiary epilepsy centers. We are seeking to understand what is the most efficient and cost effective use of financial resources to support children and their families with epilepsy. Once that is clear, we also seek to disseminate that information nationally.
Value Based SIG Leader: Matthew Sweney, M.D., University of Utah