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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 LU ; Lerche, Holger ; Pitkänen, Asla ; Ryvlin, Philippe and Simonato, Michele , et al. (2023) In Epilepsy Research 189.
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... (More)

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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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Brain, Diagnosis, Epilepsy, Horizon Europe, Public Patient Involvement, Research agenda, Stakeholders, Therapeutics
in
Epilepsy Research
volume
189
article number
107068
publisher
Elsevier
external identifiers
  • scopus:85144362967
  • pmid:36549242
ISSN
0920-1211
DOI
10.1016/j.eplepsyres.2022.107068
language
English
LU publication?
yes
id
50a82b5b-eb18-462f-874d-a0b8483ccb12
date added to LUP
2023-02-08 16:27:46
date last changed
2024-06-10 00:21:38
@article{50a82b5b-eb18-462f-874d-a0b8483ccb12,
  abstract     = {{<p>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.</p>}},
  author       = {{Henshall, David C. and Arzimanoglou, Alexis and Dedeurwaerdere, Stefanie and Guerrini, Renzo and Jozwiak, Sergiusz and Kokaia, Merab and Lerche, Holger and Pitkänen, Asla and Ryvlin, Philippe and Simonato, Michele and Sisodiya, Sanjay M.}},
  issn         = {{0920-1211}},
  keywords     = {{Brain; Diagnosis; Epilepsy; Horizon Europe; Public Patient Involvement; Research agenda; Stakeholders; Therapeutics}},
  language     = {{eng}},
  publisher    = {{Elsevier}},
  series       = {{Epilepsy Research}},
  title        = {{Shaping the future of European epilepsy research : Final meeting report from EPICLUSTER}},
  url          = {{http://dx.doi.org/10.1016/j.eplepsyres.2022.107068}},
  doi          = {{10.1016/j.eplepsyres.2022.107068}},
  volume       = {{189}},
  year         = {{2023}},
}