Table Of Content. Outputs... 9

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1 Table Of Content A european pilot network of reference centres in refractory epilepsy and epilepsy surgery... 2 Summary... 3 Coordinator, Leader contact and partners... 6 UNIVERSITAIR MEDISCH CENTRUM UTRECHT... 6 University Hospital Saint Ivan Rilski... 6 Goeteborgs Universitet... 6 Azienda Ospedaliera Niguarda Ca Granda... 6 Diakonie Kork Epilepsiezentrum... 6 ARISTOTLE UNIVERSITY OF THESSALONIKI... 6 University Clinical Hospital Sestre milosrdnice... 6 Oslo University Hospital... 6 UNIVERSITAETSKLINIKUM BONN... 6 Univerzita Karlova v Praze... 6 CHRISTIAN DOPPLER KLINIK - UNIVERSITATSKLINIK FUR NEUROLOGIE... 6 University College London... 6 Outputs... 9 Page 1/9

2 A european pilot network of reference centres in refractory epilepsy and epilepsy surgery JA GPSD [705038] START DATE: 01/01/2014 END DATE: 01/01/2017 DURATION: 36 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: Second Programme of Community action in the Field of Health PROGRAMME PRIORITY: - CALL: Promote Health (Hp-2013) TOPIC: PROMOTE HEALTH (HP-2013) EC CONTRIBUTION: EUR KEYWORDS: Page 2/9

3 SUMMARY General objectives General objective E-PILEPSY aims at achieving significant and sustained progress in the quality and harmonisation of healthcare provision delivered to children and adults with refractory epilepsy across Europe. More specifically, we wish to trigger accelerated development of epilepsy surgery, the one treatment option offering reasonable chances for definite cure, by promoting cooperation between highly specialised neurology, clinical neurophysiology and neurosurgery centres in all EU regions. We will reduce current inequalities between EU countries in all aspects related to refractory epilepsy (expertise, quality of care, policies), increase and facilitate access to epilepsy surgery by working with all stakeholders (patients, professionals, policymakers),and optimize presurgical diagnostic procedures to offer a greater chance of postoperative seizure freedom at reduced risk of surgery related complication and morbidity. Strategic relevance and contribution to the public health programme E-PILEPSY addresses one major public health issue affecting 2 million Europeans, following the recommendations of the 2011 written declaration on Epilepsy. As stated by the 2nd health program, «the current economic and financial crisis underscores the need to invest effectively in health, in order to deliver better services with sustainable health budgets». E-PILEPSY will tackle this issue by: - concentrating on the highly cost-effective epilepsy surgery care where cost-saving can yield relevant economies of scale - developing web-based actions which have the greatest leverage potential at the EU level Accordingly, our project is primarily based on the development & use of modern (webbased), responsive, inclusive, cost-effective (epilepsy surgery cost-saving), innovative (unique E-Processing and E-Care platforms), and sustainable E-Medicine solutions. Page 3/9

4 E-PILEPSY will also contribute to the development of EU policies in the field of health, and will directly support art. 12 of the EU Directive 2011/24, by prefiguring a European Reference Network (ERN). Methods and means All developments will use the RAND/UCLA Appropriateness Method, based on the best available evidence along with expert opinion to develop explicit criteria to guide appropriateness of care. A dedicated web-site will be created to support all web-based projects and deliverables. It will include the E-Eligibility application, an on-line algorithm which will provide individual assessment of patient s eligibility to surgery. The E-Neuropsych, E-Processing, E-Care, and E-Database applications will be developed by accredited specialists from our network. E-Care will allow uploading of patient s clinical, imaging & EEG data. E-Database will capture all relevant information regarding every patients entering presurgical evaluation within the network. An exchange & training program, primarily targeting young physicians from the lowerresources centres of our network, will complete our web-base project Finally, an economically viable model will be developed to ensure the sustained running, dissemination and development of E-PILEPSY after the end of the project. Expected outcomes period The primary expected outcome of E-PILEPSY is to increase the number and proportion of European children and adult patients cured from their refractory epilepsy by improving delivery of optimal epilepsy surgery throughout Europe, thanks to: -Improved and harmonised knowledge and skills of European physicians specialised in the management of refractory epilepsy and epilepsy surgery, -Improved knowledge and empowerment of European patients with refractory epilepsy, their families, and primary care givers, -Improved evidence-based knowledge of EU health authorities and policy makers, regarding optimal strategies to tackle refractory epilepsy, develop and regulate epilepsy surgery programs in Europe - A Sustainable model for the long term development and upgrade of E-PILEPSY website and applications(ern prefiguration) Eventually, the increased number of patients cured by epilepsy surgery will translate into reduced mortality of young adults with refractory epilepsy and major cost-saving for the EU (8000 /year/each successful surgery). Page 4/9

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6 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR Universite Claude Bernard Lyon 1 (Universite Claude Bernard Lyon 1) 43 boulevard du 11 Novembre villeurbanne cedex France Project leader contact Name: RYVLIN PHILIPPE ryvlin@cermep.fr Phone: PARTNERS UNIVERSITAIR MEDISCH CENTRUM UTRECHT Street: HEIDELBERGLAAN 100 City: 3584 CX UTRECHT Country: Netherlands University Hospital Saint Ivan Rilski Street: blv. Academic Ivan Geshov,15 City: 1431 sofia Country: Bulgaria Goeteborgs Universitet Street: Vasaparken, Box 100 City: Gothenburg Country: Sweden Page 6/9

7 Azienda Ospedaliera Niguarda Ca Granda Street: Piazza Ospedale Maggiore 2 City: I Milano Country: Italy Diakonie Kork Epilepsiezentrum Street: Landstraße.1 City: Kehl-Kork Country: Germany ARISTOTLE UNIVERSITY OF THESSALONIKI Street: University Campus, Tritis Septemvriou City: Thessaloniki Country: Greece University Clinical Hospital Sestre milosrdnice Street: Vinogradska ulica 29 City: Zagreb Country: Croatia Oslo University Hospital Street: Post Box 53 Bærum Postterminal City: 1306 Oslo Country: Norway UNIVERSITAETSKLINIKUM BONN Street: SIGMUND FREUD STRASSE 25 City: BONN Country: Germany Page 7/9

8 Univerzita Karlova v Praze Street: Ovocny Trh 3/5 City: Prague 1 Country: Czech Republic CHRISTIAN DOPPLER KLINIK - UNIVERSITATSKLINIK FUR NEUROLOGIE Street: IGNAZ HARRER STRASSE 79 City: AT-5020 SALZBURG Country: Austria University College London Street: Gower St 1 City: WC1E 6BT London Country: United Kingdom Page 8/9

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