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
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
107068Informations de copyright
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