Call for the use of the ILAE terminology for seizures and epilepsies by health care professionals and regulatory agencies to benefit patients and caregivers

Author:

Auvin Stéphane123ORCID,Arzimanoglou Alexis4ORCID,Brambilla Isabella5ORCID,French Jacqueline6ORCID,Knupp Kelly G.78ORCID,Lagae Lieven9ORCID,Perucca Emilio1011ORCID,Trinka Eugen121314ORCID,Dlugos Dennis1516

Affiliation:

1. INSERM NeuroDiderot, Université Paris Cité Paris France

2. Pediatric Neurology Department APHP, CRMR Epilepsies Rares, member of European Reference Network EpiCARE, Robert Debré University Hospital Paris France

3. Institut Universitaire de France Paris France

4. Coordinating Member of the European Reference Network EpiCARE, Children's University Hospital San Juan de Dios Barcelona Spain

5. Coordinator, EPAG Patient Group, European Reference Network EpiCARE, Dravet Italia Onlus Verona Italy

6. Department of Neurology NYU Grossman School of Medicine New York New York USA

7. Department of Pediatrics University of Colorado Anschutz Medical Campus Aurora Colorado USA

8. Department of Neurology University of Colorado Anschutz Medical Campus Aurora Colorado USA

9. Member of the European Reference Network EPICARE, Paediatric Neurology Section, Department of Development and Regeneration University Hospitals KU Leuven Leuven Belgium

10. Department of Medicine (Austin Health) University of Melbourne Mebourne Victoria Australia

11. Department of Neuroscience Central Clinical School, Monash University Melbourne Victoria Australia

12. Member of European Reference Network EpiCARE, Department of Neurology, Center for Cognitive Neuroscience, Christian Doppler University Hospital Paracelsus Medical University Salzburg Austria

13. Neuroscience Institute, Center for Cognitive Neuroscience, Christian Doppler University Hospital Paracelsus Medical University Salzburg Austria

14. Institute of Public Health, Medical Decision Making and Health Technology Assessment University for Health Sciences, Medical Informatics, and Technology Hall in Tyrol Austria

15. Pediatric Epilepsy Program, Division of Neurology Department of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA

16. Pediatric Epilepsy Program, Division of Neurology, Department of Pediatrics Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA

Abstract

AbstractThe International League Against Epilepsy (ILAE) introduced a classification for seizure types in 2017 and updated the classification for epilepsy syndromes in 2022. These classifications aim to improve communication among healthcare professionals and help patients better describe their condition. So far, regulatory agencies have used different terminology. This paper stresses the crucial need for consistently adopting ILAE terminology in both regulatory processes and clinical practice. It highlights how language plays a significant role in healthcare communication and how standardized terminology can enhance patient comprehension. The ongoing review of guidelines by regulatory bodies offers a timely opportunity. Aligning regulatory terminologies holds the potential to facilitate discussions on future drug development and harmonize practices across diverse regions, ultimately fostering improved care and research outcomes in epilepsy treatment.

Publisher

Wiley

Subject

Neurology (clinical),Neurology

Reference9 articles.

1. Operational classification of seizure types by the International League Against Epilepsy: Position Paper of the ILAE Commission for Classification and Terminology

2. Methodology for classification and definition of epilepsy syndromes with list of syndromes: Report of the ILAE Task Force on Nosology and Definitions

3. Proposal for Revised Clinical and Electroencephalographic Classification of Epileptic Seizures.

4. European Medicines Agency.Draft guideline on clinical investigation of medicinal products in the treatment of epileptic disorders ‐ Revision 3 [online]. Available at:https://www.ema.europa.eu/en/documents/scientific‐guideline/draft‐guideline‐clinical‐investigation‐medicinal‐products‐treatment‐epileptic‐disorders‐revision‐3_en‐0.pdf. Accessed December 1st 2023.

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