ELHS Abstracts & Publications
The purpose of the Epilepsy Learning Healthcare System (ELHS) is to use data to identify and eliminate inequalities in care and health outcomes to advance epilepsy practice and patient well-being. The goal is to make people better now, not years from now. Below is a list of important abstracts and publications that help explain more about the research and information provided by ELHS.
Learn More:
Epilepsy Learning Healthcare System (ELHS)Recent abstracts and publications:
2024
Levi Barros, MD; Caroline Banfi; Chelsea N. Wong, MD; Mackenzie P Lerario, MD; Alison Kukla, MPH; Sahar Zafar, MD MSc; Lidia M.V.R. Moura, MD. Seizure control in the LGBTQ+ community: A Pioneer Retrospective Cohort Study. American Academy of Neurology. April 2024.
2023
Abend N, Helbig I, DiGiovine M, Fitzgerald M, MD, Fried L, Gonzalez A, MS – Children's Hospital of Philadelphia; Michael Kaufman M, MS – Children's Hospital of Philadelphia; Sudha Kessler S, MD, MSCE – Children's Hospital of Philadelphia; Pamela McDonnell P, MD – Children's Hospital of Philadelphia; Susan Melamed S, Parikh D, Prelack M, Ramos M, Riisen A, Scotti-Degnan C, Sarah Tefft S, Stephanie Witzman S. Establishing a Model for Site Participation in an Epilepsy Learning Healthcare System. American Epilepsy Society. December 2023.
Akrama H, Brooks J, Donahue M, Nuthalapati P, Buchhalter J, Farrell K, Herman S, Zafar S, Abend N, Pellinen J, Ficker D, Benard S, Fureman B, Moura L. Establishing a National Epilepsy Learning Healthcare System: Identifying Treatment Barriers. American Epilepsy Society. December 2023.
Alhallaq L, Brooks J, Donahue MA, Farrell K, Fureman B, Buchhalter J, Abend N, Herman S, Pellinen J, Ficker D, Benard S, W, Sirsi D, Moura L, Zafar S. Discrepancies in Patient- and Provider- Reported Seizure Frequencies. American Epilepsy Society. December 2023.
Coelho, ElHassan A, Donahue M, Yashmi S, Trescher W, Herman S, Pellinen J, Fureman B, Buchhalter J, Moura L. A Multicenter Assessment of Patient- and Provider-Reported Outcomes to Inform Healthcare Disparities in Epilepsy Care. American Academy of Neurology. April 2023.
Coelho L, Sevak Y, Donahue M, Nuthalapati P, Buchhalter J, Fureman B, Herman S, Finkelstein S, Moura L. Unraveling the Relationship between Seizure Control and Mental Health Screening Scores in Patient with Epilepsy. American Epilepsy Society. December 2023.
Donahue MA, Brooks J, Farrell K, Buchhalter J, Zafar S, Fureman B. National Epilepsy Learning Healthcare Registry: Mental Health in the LGBTQ + Community. American Epilepsy Society. December 2023.
Ficker D, Hoffman D. Identifying Barriers to Antiseizure Medication Adherence Using a Checklist at a Specialty Epilepsy Center. American Epilepsy Society. December 2023.
Hammad Akrama, Julianne Brooks, MPHa, Maria A. Donahue, MDa, Poojith Nuthalapati, MDa, Jeffrey Buchhalter, MD PhDb, Kathleen Farrell, MD MB. Establishing a National Epilepsy Learning Healthcare System: Identifying Treatment Barriers. American Academy of Neurology. December 2023.
Lilian M.G. Coelho; Maria A. Donahue; Yashmi S. Sevak; Poojith Nuthalapati; Jeffrey Buchhalter; Brandy Fureman; Susan Herman; Lidia M.V.R. Moura . Feasibility and Insights from Automated Depression and Anxiety Screening for People with Epilepsy. American Academy of Neurology. April 2023.
Lilian M.G. Coelho; Maria A. Donahue; Yashmi S. Sevak; Poojith Nuthalapati; Jeffrey Buchhalter; Brandy Fureman; Susan Herman; Lidia M.V.R. Moura. Unraveling the Relationship between Seizure Control and Mental Health Screening Scores in Patient with Epilepsy. American Academy of Neurology. December 2023.
Nuthalapati P, Thomas L, Donahue MA, Moura LMVR, DeStefano S, Simpson JR, Buchhalter J, Fureman BE, Pellinen J. Improving Seizure Frequency Documentation and Classification. Neurol Clin Pract. 2023 Dec;13(6):e200212. doi: 10.1212/CPJ.0000000000200212. Epub 2023 Oct 19. PMID: 37873534; PMCID: PMC10586801.
Nuthalapati P, Brooks J, Maria L, Coelho G, Donahue M, Herman S, Abend N, Trescher W, Buchhalter J, Fureman B, Zafar S, Moura L. Seizure Variant in a Nationwide Epilepsy Registry through International League Against Epilepsy Classification: A Phenotypic Approach. American Epilepsy Society. December 2023.
2022
Cardall A, Moura L, Jacobs C, Zafar S, Westover B. Identification of patients with epilepsy from electronic health records using text mining. American Epilepsy Society. December 2022.
DeStefano S, PellinenJ, Sillau S, Buchhalter J. Standardization of seizure response times and data collection in an Epilepsy Monitoring Unit. Epilepsy Research. 2022;180:106869. doi:10.1016/j.eplepsyres.2022.106869
Fernandes M, Donahue MA, Hoch D, et al. A replicable, open-source, data integration method to support National Practice-based Research & Quality Improvement Systems. Epilepsy Research. 2022;186:107013. doi:10.1016/j.eplepsyres.2022.107013
Lin N, Tencer J, Buchhalter J, Clifford L, Grimm J, Cronin S Whitesell, K, Hagans C, Clements M,
Holland K. Improving Medication Adherence Screenings in Children with Epilepsy- One Center
Experience as part of the Epilepsy Learning Healthcare System. Child Neurology Society. October 2022.
Moura L, Mejia N; McGraw, C, Donahue M, Zafar S, Fureman B, Buchhalter J, Schwamm L, Heng M, Sisodia R. A real-time dashboard of patient-reported determinants of health disparities and adherence to epilepsy quality metrics in a large healthcare system. American Epilepsy Society. December 2022.
Munger Clary H, Josephson SA, Franklin G, et al. Seizure frequency process and outcome quality measures. Neurology. 2022;98(14):583-590. doi:10.1212/wnl.0000000000200239
Thomas L, Pellinen J, DeStefano S. Improving seizure frequency documentation and classification. American Epilepsy Society. December 2022.
Trescher W, Paudel S, Naik S, Byrnes C, Kandel P, Tariq S, Donahue M, Farrell K, Fureman B, Buchhalter J, Moura L. Quality Improvement in Epilepsy Care: Characterization of the Population in a Mixed Rural and Small Urban Seng #66. Child Neurology Society. October 2022.
Tveter E, Huang J, Akbar A, Binete K, Gunn C, Jacobs C, Zafar S, Hoch D, M. D, Voinescu P, Moura L, Buchhalter J, McGraw C. Optimizing resource utilization in completion of epilepsy patient-reported outcome measures. American Epilepsy Society. December 2022.
Vinson AH, Seid M, Gamel B, et al. Toward an ontology of Collaborative Learning Healthcare Systems. Learning Health Systems. 2022;6(3). doi:10.1002/lrh2.10306
2021
Donahue MA, Herman ST, Dass D, et al. Establishing a learning healthcare system to improve health outcomes for people with epilepsy. Epilepsy & Behavior. 2021;117:107805. doi:10.1016/j.yebeh.2021.107805
Goldstein J, Kwon C-S, Harmon M, et al. Seizure documentation in people living with epilepsy. Epilepsy & Behavior. 2021;125:108383. doi:10.1016/j.yebeh.2021.108383
Mathew B, Goldstein J, Rossi K, Modi A, Buchhalter J, Ficker D, Kriakopoulos E, Bhraguvanshi A,
Farrell K, Soeby L, Tencer J, Blank L, Jette N. The Quality of Self-Reported Tools Used to Measure
Antiseizure Medication Adherence: A systematic Review. American Epilepsy Society. December 2021.
Moura L, Dass D, Smith J, Donahue M, Sanches P, Ayub N. Telemedicine can support measurable and high-quality epilepsy care during the COVID-19 pandemic. Epilepsy & Behavior. doi: 10.1097/01.JMQ.0000733444
Tencer J, Abend N, DiGiovine M, et al. Improving Medication Non-Adherence Screening and Provider Interventions for Children with Epilepsy (2166). American Academy of Neurology. April 2021.
2020
Jones FJS, Smith JR, Ayub N, et al. Implementing standardized provider documentation in a tertiary epilepsy clinic. Neurology. 2020;95(2). doi:10.1212/wnl.0000000000009778
Jones FJS, Ezzeddine FL, Herman ST, Buchhalter J, Fureman B, Moura LMVR. A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in Adult Epilepsy Clinics: A systematic review. Epilepsy & Behavior. 2020;102:106704. doi:10.1016/j.yebeh.2019.106704
Paudel S, Kandel P, Mainali G, et al. Implementation of a standardized method to measure seizure outcome in a clinical practice setting. American Epilepsy Society. December 2020.
Smith JR, Jones FJS, Fureman BE, et al. Accuracy of ICD-10-CM claims-based definitions for epilepsy and seizure type. Epilepsy Research. 2020;166:106414. doi:10.1016/j.eplepsyres.2020.106414
Trescher W, Paudel S, Kandel P, Mainali G, et al. Epilepsy outcomes measured by a standardized method in a clinical practice setting. American Epilepsy Society. December 2020.
Vinson AH. Putting the network to work: Learning Networks in Rapid Response situations. Learning Health Systems. 2020;5(1). doi:10.1002/lrh2.10251
2019
Moura LMVR, Magliocco B, Ney JP, Cheng EM, Esper GJ, Hoch DB. Implementation of quality measures and patient-reported outcomes in an epilepsy clinic. Neurology. 2019;93(22). doi:10.1212/wnl.00000000000085482.
2018
Patel AD, Baca C, Franklin G, et al. Quality Improvement in neurology. Neurology. 2018;91(18):829-836. doi:10.1212/wnl.0000000000006425
Contact Us!
elhs@efa.orgResources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures 24/7 Helpline
Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
Related Stories
Press Releases
Epilepsy Foundation Introduces New Mission & Vision Statements at National Leadership Conference
Read Story Press Releases
The Epilepsy Foundation’s Pipeline Conference to Feature Groundbreaking Updates in Epilepsy Treatment & Care
Read Story