E-Pilepsy - A european pilot network of reference centres in refractory epilepsy and epilepsy surgery

Fiche  technique du Projet

Programme de financement: Agence exécutive pour la santé et les consommateurs - Executive Agency for Health and Consumers

Coordinateur: Université Claude Bernard Lyon 1, Prof. Philippe RIVLYN
Partenaires :
Université Claude Bernard Lyon 1
University College London
Universitair Medisch Centrum Utrecht
Goeteborgs Universitet
Azienda Ospedaliera Niguarda Ca’Granda
Universitaetsklinikum Bonn
Christia Doppler Klinik - Universitatsklinik fur Neurologie
Oslo University Hospital
Diakonie Kork Epilepsiezentrum
Aristotle University Of Thessaloniki
University Hospital “Saint  Ivan Rilski”
University Clinical Hospital “Sestre milosrdnice”
Univerzita Karlova v Praze

Collaborating Partners :
Ghent University Hospital
European Epilepsy Monitoring unit Association
Kuopio University Hospital
Hôpital de Hautepierre
Beaumont Hospital
National Institute of Neurosciences
Vilnius University Hospital Santariskiu Klinikos
"Carol Davila" University of Medicine
Moscow Research & Clinical Center for Neuropsychiatry
Hospital Ruber Internacional
Hôpitaux Universitaires de Genève
Klinik Elektrofizyoloji BD
Iinternational League Against Epilepsy
World Health Organisation
University of Calgary

• Budget Total: € 1 429 420
• Subvention : € 2 382 847
• Durée : 2014-2016

Context / Contexte

About 2 Million Europeans suffer from refractory epilepsy. The main therapeutic strategy used in such patients consists of modifying their antiepileptic drug regimen with very little chance of fully controlling seizures. Vagus nerve stimulation and ketogenic diet are palliative treatments offering little chance of long-term seizure freedom. In contrast, epilepsy surgery renders more than 50% of patients seizure-free, providing hope of regaining access to normal education, driving, work and personal development. In some children, timely surgery limits major mental retardation, while it can be life saving in adolescents or adults at high risk of sudden death. Successful epilepsy surgery in Europe is associated with an estimated direct and indirect cost-saving of about 8000€/year/operation (Silfvenius, Epilepsia 1999, Picot et al. Rev Neurol 2004).
However, epilepsy surgery remains largely underutilised, particularly in lower-resource EU countries. Furthermore, surgery is often performed late, after a mean duration of epilepsy greater than 15 years. The main issues responsible for this unsatisfactory situation are the following:
- The knowledge of patients, professionals, and policy makers about epilepsy surgery is poor, with erroneous views on the risk/benefit balance, cost-effectiveness of surgery, and the appropriate patients’ profile.
- State-of-the-art epilepsy surgery programs require the collaboration of highly specialised neurology, clinical neurophysiology and neurosurgery departments, which is only available at a restricted number of sites, resulting in the greatest source of inequalities in the management of refractory epilepsy across Europe.
In fact, there is no other prevalent, severely disabling chronic disease affecting thousands of European patients, including children, for which potential curative treatment is withheld. For all the above reasons, progress in the dissemination and harmonisation of best epilepsy surgery practice is a priority.

Objectives / objectifs

E-PILEPSY’s main objective is to promote a sustained increase in the proportion of European children and adults with refractory epilepsy achieving a definite cure, primarily through enhancement of epilepsy surgery in Europe, with the aim to:

(i) reduce existing major inequalities between EU countries in all aspects related to epilepsy surgery (knowledge, expertise, quality of care, policies)

(ii) increase and facilitate access to epilepsy surgery for eligible European patients, by working with all stakeholders (patients, professionals, policy-makers)

(iii) harmonize and optimize pre-surgical diagnostic procedures to offer greater chance of successful surgical outcome (i.e. seizure freedom) throughout Europe

The objective of E-PILEPSY applies to children and adult patients with refractory epilepsy, given that both age groups are equally affected by limited access to epilepsy surgery. Furthermore, complementary expertise of paediatric and adult epilepsy surgery teams offers opportunities for synergistic actions and greater dissemination.

Impact / results - Impact / résultats

Our primary aim is to increase the number of European patients being cured from refractory epilepsy, due to improved delivery of optimal epilepsy surgery throughout Europe. This outcome will result from improved and harmonised knowledge and skills of European epilepsy specialists, greater safety of medical and surgical procedures, and increased chance of patients achieving postoperative seizure freedom. We also expect to improve knowledge of European patients with epilepsy and EU health authorities, resulting into empowered patients’, appropriate guidelines, better organisation of care, more timely referral to specialized centres, facilitated access to epilepsy surgery, and significant health cost-savings at EU level.

What about LIP?

LIP assisted the project leader to set up the project: partnership building, administrative and financial coordination, advice for proposal writing and for project governance, etc. LIP is in charge of the financial and administrative management of the project.