Areas of research priorities in epilepsy: A position paper of the European Reference Network for Rare and Complex Epilepsies, EpiCARE

Abstract

Objective: To define and articulate research priorities in epilepsy identified by the European Reference Network for Rare and Complex Epilepsies (ERN EpiCARE), addressing key unmet needs across the spectrum of rare and complex epilepsies. Methods: This position paper was developed through a structured collaborative process involving patient associations and experts from EpiCARE Working Groups, the EpiCARE Executive Committee, and its Research Council. Contributions were integrated and harmonized to establish a shared set of research priorities reflecting clinical, translational, and methodological perspectives. Results: Six priority areas were identified and examined: prevention of epileptogenesis and disease-modifying challenges; genetics and targeted therapies; improved surgical decision-making; innovative trial designs and outcome measures; artificial intelligence for diagnosis and prediction; understanding and preventing comorbidities and mortality. For each priority, the paper discusses the current state of research, identifies challenges, and proposes strategic directions for future investigations. Significance: This position paper provides a strategic framework to guide future research efforts, inform prioritization by funders and policymakers, and foster coordinated collaboration across stakeholders. By advancing these priorities, the epilepsy research community aims to improve patient care, reduce health disparities, and develop innovative solutions to address the complexities of epilepsy. Plain Language Summary: This position paper, developed by the European Reference Network for Rare and Complex Epilepsies (EpiCARE) in collaboration with its Patient Advocacy Group, defines six areas of research priorities in epilepsy. Each section describes key challenges, current knowledge, and areas for improvement. They focus on preventing epilepsy, developing targeted therapies, improving surgery and clinical trials, using artificial intelligence to support diagnosis, and addressing comorbidities such as cognition, sleep, and overall health. Each provides a roadmap for clinicians and researchers to guide their research projects within their areas of expertise. Collectively, these priorities converge on actions for improving diagnosis, treatment, and patient outcomes through European collaboration and sustainable research efforts.