SUDEP
SPECIAL INTEREST GROUP
The SUDEP (Sudden Unexpected Death in Epilepsy) Special Interest Group’s aim is to advance research, clinical practice, and education related to pediatric SUDEP.
Examples of potential projects include:
Determine the incidence of pediatric SUDEP, once thought to be lower than that of adult SUDEP, but with evidence suggesting otherwise.
Identify risk factors including co-morbidities for SUDEP specifically in the pediatric population through multi-center review of cases.
Estimate SUDEP risk based on underlying epilepsy etiology particularly for rare epilepsy syndromes (TSC, SCN2a, etc).
Foster partnerships with researchers and institutions in the understanding the physiologic underpinnings of pediatric SUDEP.
Assess patient and caregiver use of FDA-approved and non-approved seizure detection devices.
Collate data on SUDEP incidence in patients undergoing newer epilepsy treatments such as RNS, DBS, cenobamate, fenfluramine, and disease-modifying (gene) therapy in Dravet Syndrome as well as in those who have undergone epilepsy surgery.
Understand barriers to SUDEP counseling and optimize education tools to enhance provider engagement.
Determine effective methods and identify tools for SUDEP counseling performed by providers for pediatric patients and their caregivers with an epilepsy diagnosis.
Assess current provider comfort and challenges to SUDEP counseling via a PERC provider survey.
Develop effective counseling guidelines using a Delphi consensus to standardize counseling
Assess impact of timing of counseling on SUDEP for pediatric patients and the psychological impact of early versus later counseling in the therapeutic relationship particularly as it relates to age and cognitive status of the pediatric patient.
Assess impact of SUDEP on provider mental health and create content for support.
Sig leader
Sarah Weatherspoon, MD
University of Tennessee Health Science Center
Memphis, Tennessee
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Dr Sarah Weatherspoon is a pediatric neurologist and surgical epileptologist at Le Bonheur Children’s Hospital (LBCH) and Associate Professor of Pediatric Neurology at the University of Tennessee Health Science Center in Memphis, Tennessee. In addition, she is the Associate Chief of the LBCH Pediatric Neurology Division. She founded the Infantile Epilepsy Center and oversees the Epilepsy Surgery Collaborative at LBCH.
Dr. Weatherspoon is the Co-Director of the LBCH Tuberous Sclerosis Center of Excellence and is one of the founding members of the TSC Reproductive and Perinatal Health Taskforce in conjunction with the TSC Alliance.
Dr. Weatherspoon graduated Summa Cum Laude from Baylor University with a Bachelor of Science in Neuroscience. She earned her medical degree from the University of Texas Southwestern Medical School in Dallas, Texas. She completed her Child Neurology residency and Clinical Neurophysiology fellowship at Cincinnati Children’s Hospital Medical Center. She is board certified in Child Neurology, Clinical Neurophysiology, and Epilepsy.