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

Brain Diagnosis Epilepsy Horizon Europe Public Patient Involvement Research agenda Stakeholders Therapeutics

Journal

Epilepsy research
ISSN: 1872-6844
Titre abrégé: Epilepsy Res
Pays: Netherlands
ID NLM: 8703089

Informations de publication

Date de publication:
Jan 2023
Historique:
received: 07 11 2022
accepted: 15 12 2022
pubmed: 23 12 2022
medline: 25 1 2023
entrez: 22 12 2022
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 36549242
pii: S0920-1211(22)00219-4
doi: 10.1016/j.eplepsyres.2022.107068
pii:
doi:

Types de publication

Letter

Langues

eng

Sous-ensembles de citation

IM

Pagination

107068

Informations de copyright

Copyright © 2022 Elsevier B.V. All rights reserved.

Auteurs

David C 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.

Alexis 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, Spain.

Stefanie Dedeurwaerdere (S)

Neurosciences Therapeutic Area, UCB Pharma, Braine-l'Alleud, Belgium.

Renzo Guerrini (R)

Neuroscience Department, Children's Hospital A. Meyer-University of Florence, Viale Pieraccini 24, 50139 Firenze, Italy.

Sergiusz Jozwiak (S)

The Children's Memorial Health Institute, Al. Dzieci Polskich 20, 04-730 Warsaw, Poland.

Merab Kokaia (M)

Epilepsy Center, Department of Clinical Sciences, Lund University Hospital, Sölvegatan 17, BMC A11, 221 84 Lund, Sweden.

Holger Lerche (H)

Department of Neurology and Epileptology, Hertie Institute for Clinical Brain Research, University, Hospital Tübingen, Hoppe-Seyler-Str. 3, 72076 Tübingen, Germany.

Asla Pitkänen (A)

Epilepsy Research Laboratory, A.I. Virtanen Institute for Molecular Sciences, University of Eastern Finland, Neulaniementie 2, FIN-70 211, Kuopio, Finland.

Philippe Ryvlin (P)

Department of Clinical Neurosciences, Lausanne University Hospital and University of Lausanne, Champ de l'Air Rue du Bugnon 21, 1011, Lausanne, Switzerland.

Michele 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.

Sanjay M Sisodiya (SM)

Department of Clinical and Experimental Epilepsy, UCL Queen Square Institute of Neurology, 12 Queen Square, London, WC1N 1PJ, United Kingdom.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH