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Shaping the future of European epilepsy research: Final meeting report from EPICLUSTER.
Henshall, David C; Arzimanoglou, Alexis; Dedeurwaerdere, Stefanie; Guerrini, Renzo; Jozwiak, Sergiusz; Kokaia, Merab; Lerche, Holger; Pitkänen, Asla; Ryvlin, Philippe; Simonato, Michele; Sisodiya, Sanjay M.
Afiliación
  • Henshall DC; 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.
  • Arzimanoglou A; 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, Sp
  • Dedeurwaerdere S; Neurosciences Therapeutic Area, UCB Pharma, Braine-l'Alleud, Belgium.
  • Guerrini R; Neuroscience Department, Children's Hospital A. Meyer-University of Florence, Viale Pieraccini 24, 50139 Firenze, Italy.
  • Jozwiak S; The Children's Memorial Health Institute, Al. Dzieci Polskich 20, 04-730 Warsaw, Poland.
  • Kokaia M; Epilepsy Center, Department of Clinical Sciences, Lund University Hospital, Sölvegatan 17, BMC A11, 221 84 Lund, Sweden.
  • Lerche H; Department of Neurology and Epileptology, Hertie Institute for Clinical Brain Research, University, Hospital Tübingen, Hoppe-Seyler-Str. 3, 72076 Tübingen, Germany.
  • Pitkänen A; Epilepsy Research Laboratory, A.I. Virtanen Institute for Molecular Sciences, University of Eastern Finland, Neulaniementie 2, FIN-70 211, Kuopio, Finland.
  • Ryvlin P; Department of Clinical Neurosciences, Lausanne University Hospital and University of Lausanne, Champ de l'Air Rue du Bugnon 21, 1011, Lausanne, Switzerland.
  • Simonato M; 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.
  • Sisodiya SM; Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, 12 Queen Square, London, WC1N 1PJ, United Kingdom.
Epilepsy Res ; 189: 107068, 2023 Jan.
Article en En | MEDLINE | ID: mdl-36549242
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.
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Texto completo: 1 Base de datos: MEDLINE Asunto principal: Médicos / Encefalopatías / Epilepsia Tipo de estudio: Guideline País/Región como asunto: Europa Idioma: En Revista: Epilepsy Res Asunto de la revista: CEREBRO / NEUROLOGIA Año: 2023 Tipo del documento: Article

Texto completo: 1 Base de datos: MEDLINE Asunto principal: Médicos / Encefalopatías / Epilepsia Tipo de estudio: Guideline País/Región como asunto: Europa Idioma: En Revista: Epilepsy Res Asunto de la revista: CEREBRO / NEUROLOGIA Año: 2023 Tipo del documento: Article