Big data helps assess seizure burden, improve outcomes in pediatric epilepsy patients

Philadelphia, June 3, 2021 – Researchers at the Children’s Hospital of Philadelphia (CHOP) have demonstrated how to use standardized reporting of clinical data for seizures caused by a variety of neurological disorders, providing basic information that can help determine which methods are best work to keep attacks under control. The findings are published today in the journal Epilepsy.

To make improvements in epilepsy care, clinicians need a reliable and efficient method to measure outcomes. Although Electronic Medical Records (EMR) are increasingly being used for research and quality improvement, important epilepsy outcome measures, such as seizure frequency or quality of life, have not been documented in a standardized manner that allows researchers to process large-scale data on the subject. .

To help standardize how clinical data is captured for epilepsy visits, the CHOP team began using common data elements (CDEs) to ensure that relevant data is captured in a comparable manner in studies and clinical visits. In this study, the researchers assessed the outcomes of using CDEs in the routine care of pediatric epilepsy over a 12-month period.

“For those of us treating pediatric epilepsy patients, we are constantly trying to assess how we are doing and how we can improve outcomes for our patients,” says Mark P. Fitzgerald, MD, PhD, a pediatric neurologist in the Department of Neurology at CHOP and first author of the study. “This study provides us with fundamental data that will serve as a foundation for how we treat our patients and how we can achieve the best possible patient-centered outcomes.”

The researchers looked at nearly 1,700 visits from more than 1,000 individual patients with childhood epilepsy. The survey spanned about a year, with visits made by 32 different providers in the CHOP network. Overall, 43% of patients had at least one seizure per month, 17% had at least one seizure every day, and 18% of patients were seizure-free for at least one year. The most common epilepsy syndromes were childhood epilepsy, Lennox-Gastaut syndrome, and Dravet syndrome. The researchers were able to quantify absolute seizure burden, changes in seizure burden over time and differences between syndromes.

In addition, because this study was conducted when the COVID-19 pandemic began, the researchers assessed the use of telemedicine to capture this information. They found that patients had similar seizure rates whether assessed in person or through telemedicine. The study also found that patients who identified as Hispanic or Latino, particularly from areas of lower median household income, were more likely to have persistent seizures that worsened over time.

“Currently, CHOP is the only neurology program that generates this level of patient information from ongoing care rather than just research studies,” said senior author Ingo Helbig, MD, attending physician and director of the Epilepsy Neurogenetics Initiative (ENGIN) Genomics and Data Science Core at CHOP. “This study represents a major paradigm shift in the way we assess and provide care to our pediatric neurologic patients.”


This study was supported by The Hartwell Foundation through an Individual Biomedical Research Award, the National Institute for Neurological Disorders and Stroke (K02 NS112600), including support through the Center Without Walls on ion channel function in epilepsy (“Channelopathy-associated Research Center”, U54 NS108874), the Eunice Kennedy Shriver National Institute of Child Health and Human Development through the Intellectual and Developmental Disabilities Research Center (IDDRC) at CHOP and the University of Pennsylvania (U54 HD086984), and through intramural funds from the Children’s Hospital of Philadelphia through the Epilepsy NeuroGenetics Initiative. This study was also supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1TR001878, the German Research Foundation (DFG; HE5415/3-1, HE5415/5-1 and HE5415/6-1) and the DFG/FNR INTER Research Unit FOR2715 (He5415/7-1). This project was further supported in part by the Institute for Translational Medicine and Therapeutics’ (ITMAT) Transdisciplinary Program in Translational Medicine and Therapeutics at the University of Pennsylvania Perelman School of Medicine, and the International League Against Epilepsy (ILAE).

Fitzgerald et al, “Assessing Seizure Burden in Pediatric Epilepsy Using an Electronic Health Record Based Tool Through a Common Data Element Approach.” Epilepsy, online June 2, 2021. DOI: 10.1111/epi.16934.

About the Children’s Hospital of Philadelphia: The Children’s Hospital of Philadelphia was founded in 1855 as the country’s first children’s hospital. Through its longstanding commitment to providing exceptional patient care, educating new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. The pediatric research program is one of the largest in the country. In addition, its unique family-centered care and public service programs have recognized the 595-bed hospital as a leading advocate for children and adolescents. For more information, visit

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