Weclome to the UK Epilepsy Research Network (UKERN) Website
About UKERN
The UK Epilepsy Research Network was established in 2009 by epilepsy researchers
across the UK. You can read about the thinking behind the network and some of the preliminary discussions that took place
in December 2008 and March 2009 using the link below.
UKERN Proposal
The main aims of UKERN are: - To
improve care of people with epilepsy in the UK
- To improve the coordination of epilepsy research in the UK
- To
maintain and enhance the quality of epilepsy research in the UK
- To facilitate collaboration between epilepsy research centres, particularly
in large scale studies
- To widen participation in epilepsy research in the UK
Structure of UKERN
UKERN consists of a Management Group and three clinical
study groups entitled Diagnosis
and Aeitology, Interventions and Therapies and
Impact and Outcomes. The titles of the CSGs were chosen to reflect a
patient’s journey with epilepsy.
| UKERN Structure |
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The
management Group oversees the running of the network, defines general policy for the CSGs, ensures that the CSGs are working
well, and takes decisions that cannot be made by the CSGs individually. It meets twice per year. The Management Group is chaired
by the UKERN Director.
The CSGs are multi-disciplinary and have a range of responsibilities, outlined
below. They meet twice per year face-to-face, but communicate regularly via teleconference and email. Although the CSGs cover
different aspects of epilepsy research, there is a flow of information between them.
The responsibilities of the CSG members include: - Developing and overseeing a portfolio of UK
epilepsy studies, relevant to their CSG
- Identifying
research gaps within the portfolio
- Being
aware of portfolios of the other CSGs and considering potential overlap with other CSGs
- Developing a central database for patient recruitment
- Encouraging collaboration between different institutes that have similar research interests
- Proposing and developing
new well-designed studies and trials
- Considering
studies proposed by others (primarily industry) and advising on whether these studies should be adopted by UKERN and UKCRN
via the Neurological Disorders Specialist Group
- Considering
studies from outside the UK to include in the portfolio
- Receiving inputs where appropriate from epilepsy research funders and other appropriate
organisations
- Ensuring
public and patient involvement (PPI) ) (http://www.ukern.co.uk/ppi)
- Undergoing a 3-yearly peer review of their overall portfolio
Each CSG has an elected leader who sites on the Management Group
