Shaping the future of European epilepsy research: Final meeting report from EPICLUSTER

David C Henshall; Alexis Arzimanoglou; Stefanie Dedeurwaerdere; Renzo Guerrini; Sergiusz Jozwiak; Merab Kokaia; Holger Lerche; Asla Pitkänen; Philippe Ryvlin; Michele Simonato; Sanjay M Sisodiya

doi:10.1016/j.eplepsyres.2022.107068

Shaping the future of European epilepsy research: Final meeting report from EPICLUSTER

Epilepsy Res. 2023 Jan:189:107068. doi: 10.1016/j.eplepsyres.2022.107068. Epub 2022 Dec 18.

Authors

Affiliations

¹ Department of Physiology & Medical Physics and FutureNeuro SFI Centre, RCSI University of Medicine and Health Sciences, 123 St. Stephen's Green, Dublin D02 YN77, Ireland. Electronic address: dhenshall@rcsi.ie.
² Department of Paediatric Clinical Epileptology, Sleep Disorders and Functional Neurology, University Hospital of Lyon-HCL, Coordinator of the ERN EpiCARE, Lyon, France and Epilepsy Research Unit, Children's Hospital Sant Joan de Déu, Member of the ERN EpiCARE, Universitat de Barcelona, Barcelona, Spain.
³ Neurosciences Therapeutic Area, UCB Pharma, Braine-l'Alleud, Belgium.
⁴ Neuroscience Department, Children's Hospital A. Meyer-University of Florence, Viale Pieraccini 24, 50139 Firenze, Italy.
⁵ The Children's Memorial Health Institute, Al. Dzieci Polskich 20, 04-730 Warsaw, Poland.
⁶ Epilepsy Center, Department of Clinical Sciences, Lund University Hospital, Sölvegatan 17, BMC A11, 221 84 Lund, Sweden.
⁷ Department of Neurology and Epileptology, Hertie Institute for Clinical Brain Research, University, Hospital Tübingen, Hoppe-Seyler-Str. 3, 72076 Tübingen, Germany.
⁸ Epilepsy Research Laboratory, A.I. Virtanen Institute for Molecular Sciences, University of Eastern Finland, Neulaniementie 2, FIN-70 211, Kuopio, Finland.
⁹ Department of Clinical Neurosciences, Lausanne University Hospital and University of Lausanne, Champ de l'Air Rue du Bugnon 21, 1011, Lausanne, Switzerland.
¹⁰ Department of Neuroscience and Rehabilitation, University of Ferrara, Via Fossato di Mortara 17-19, 44121 Ferrara, Italy; Division of Neuroscience, San Raffaele Hospital, Via Olgettina 58, 20132 Milan, Italy.
¹¹ Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, 12 Queen Square, London, WC1N 1PJ, United Kingdom.

PMID: 36549242
DOI: 10.1016/j.eplepsyres.2022.107068

Abstract

Collaboration is essential to the conduct of basic, applied and clinical research and its translation into the technologies and treatments urgently needed to improve the lives of people living with brain diseases and the health professionals who care for them. EPICLUSTER was formed in 2019 by the European Brain Research Area (EBRA) to support the coordination of epilepsy research in Europe. A key objective was to provide a platform to discuss shared research priorities by bringing together scientists and clinicians with multiple stakeholders including patient organisations and industry and the networks and infrastructures that provide healthcare and support research. Additional objectives were to facilitate access and sharing of data and biosamples, working together to ensure epilepsy is a priority for research funding, and embedding a culture of public and patient involvement (PPI) among epilepsy researchers. In this meeting report, we summarise the shared research priorities discussed by the leadership of EPICLUSTER at the recent final meeting. We also briefly review the discussion on patient and industry priorities, guidance on starting PPI for epilepsy researchers, and the sustainability of funding and infrastructures needed to ensure a comprehensive stakeholder-embedded community for epilepsy research.

Keywords: Brain; Diagnosis; Epilepsy; Horizon Europe; Public Patient Involvement; Research agenda; Stakeholders; Therapeutics.

Publication types

Letter

MeSH terms

Brain
Brain Diseases*
Epilepsy* / therapy
Europe
Humans
Physicians*