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About the e-pilepsy project

e-pilepsy is a pan-European project with the primary aim of improving awareness and accessibility of surgery for epilepsy across different countries.

Epilepsy surgery is an established treatment in the management of individuals with drug-resistant focal epilepsy. However there is still a lack of awareness of the likely candidates and possible benefits of epilepsy surgery amongst doctors and patients. e-pilepsy has established a consortium of 13 centres as associate partners, with a further 15 collaborating centres to drive this project. The primary expected outcome of the project is to increase the number and proportion of European children and adults cured of their refractory epilepsy by improving delivery of optimal epilepsy surgery throughout Europe.

Aspects of e-pilepsy include:

  • improving accessibility of information
  • facilitation of referral for assessment
  • improving tools for assessment
  • improving analysis of investigations as well as the training across different sites of individuals to be involved in assessment for epilepsy surgery.

Partners

The e-pilepsy project consists of an established consortium of 13 centres known as associate partners, complimented by a further 15 collaborating centres to drive the project. We are thankful to all associate partners and our collaborating centres including:

Associate partners
Collaborating partners
  • Ghent University Hospital | Belgium
  • European Epilepsy Monitoring Unit Association | Denmark
  • Kuopio University Hospital | Finland
  • Hôpital de Hautepierre, Service Neurologie | France
  • Beaumont Hospital, Epilepsy Service | Ireland
  • National Institute of Neurosciences | Hungary
  • Vilnius University Hospital Santarškių Klinikos | Lithuania
  • Carol Davila University of Medicine | Romania
  • Moscow Research & Clinical Center for Neuropsychiatry | Russia
  • Hospital Ruber Internacional | Spain
  • Hôpitaux Universitaires de Genève | Switzerland
  • Klinik Eletrofizyoloji BD, Nöroloji ABD | Turkey
  • International League Against Epilepsy | USA
  • University of Calagry | Canada
  • World Health Organisation | Switzerland
  • Lyon Ingeniérie Projets | France (Subcontractor)

Achievements

The project was initiated on 1 January 2013 funded for set-up over three years.
Since this time, the network has developed with regular meetings and discussions amongst participants. Aspects that have been or are being developed include:

  1. An ICT platform that enables web-based meetings to be utilised for the discussion of complex cases which aids surgical decision-making.
  2. In collaboration with the Canadian Appropriateness of Epilepsy Surgery study (C.A.S.E.s), an e-Eligibility tool for primary care doctors to determine whether a patient should be referred, with an international list of epilepsy surgery centres provided for doctors to find the closest and most suitable for referral. A paediatric tool for children aged under five years old, is also in development.
  3. Systematic reviews with the aim of developing definitive guidelines with regard to the pre-surgical evaluation.
  4. Online tools to aid pre-surgical evaluation including e-Neuropsychology and post processing of MRIs.
  5. An electronic clinical research form suitable for anonymised documentation and the recording of patient information.
  6. A fellowship exchange programme to aid further training.
  7. ryvling-et-al-2014.pdf
  8. rubboli-et-al-2015.pdf
  9. mouthaan-et-al-2016.pdf
  10. kobulashvili-et-al-2016.pdf
  11. vogt-et-al-2017.pdf

Professional tools

The e-pilepsy project is proud to develop and use a number of specialist tools to enhance it’s work. Some details can be found below:

  • The e-Eligibility tool : If you are considering whether you may be eligible for epilepsy surgery, we have an e-Eligibility tool available for doctors to use, to see whether referral may be appropriate. This tool may be suitable for individuals aged five years and above. A tool for young children is also in development.
  • Epilepsy surgery centres: if the e-Eligibility tool indicates that a referral should be considered, please visit this epilepsy surgery centres page to find your nearest epilepsy surgery centre.
  • The e-CRF database tool: an electronic clinical research form suitable for anonymised documentation and the recording of patient information.
  • The e-Neuropsychology tool: a specialist online tool to aid pre-surgical evaluation.
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The medical team members of the European Reference Network EpiCARE, in collaboration with patient advocates, develop and deliver highly-specialized diagnostics and care to improve interventions and outcome in individuals with rare and complex epilepsies.

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Funding

The ERN EpiCARE was created in 2017 and is co-funded by the European Union.

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