title: Epilepsy priorities in Europe: A report of the ILAE-IBE Epilepsy Advocacy Europe Task Force.
abstract: The European Forum on Epilepsy Research (ERF2013), which took place in Dublin, Ireland, on May 26-29, 2013, was designed to appraise epilepsy research priorities in Europe through consultation with clinical and basic scientists as well as representatives of lay organizations and health care providers. The ultimate goal was to provide a platform to improve the lives of persons with epilepsy by influencing the political agenda of the EU. The Forum highlighted the epidemiologic, medical, and social importance of epilepsy in Europe, and addressed three separate but closely related concepts. First, possibilities were explored as to how the stigma and social burden associated with epilepsy could be reduced through targeted initiatives at EU national and regional levels. Second, ways to ensure optimal standards of care throughout Europe were specifically discussed. Finally, a need for further funding in epilepsy research within the European Horizon 2020 funding programme was communicated to politicians and policymakers participating to the forum. Research topics discussed specifically included (1) epilepsy in the developing brain; (2) novel targets for innovative diagnostics and treatment of epilepsy; (3) what is required for prevention and cure of epilepsy; and (4) epilepsy and comorbidities, with a special focus on aging and mental health. This report provides a summary of recommendations that emerged at ERF2013 about how to (1) strengthen epilepsy research, (2) reduce the treatment gap, and (3) reduce the burden and stigma associated with epilepsy. Half of the 6 million European citizens with epilepsy feel stigmatized and experience social exclusion, stressing the need for funding trans-European awareness campaigns and monitoring their impact on stigma, in line with the global commitment of the European Commission and with the recommendations made in the 2011 Written Declaration on Epilepsy. Epilepsy care has high rates of misdiagnosis and considerable variability in organization and quality across European countries, translating into huge societal cost (0.2% GDP) and stressing the need for cost-effective programs of harmonization and optimization of epilepsy care throughout Europe. There is currently no cure or prevention for epilepsy, and 30% of affected persons are not controlled by current treatments, stressing the need for pursuing research efforts in the field within Horizon 2020. Priorities should include (1) development of innovative biomarkers and therapeutic targets and strategies, from gene and cell-based therapies to technologically advanced surgical treatment; (2) addressing issues raised by pediatric and aging populations, as well as by specific etiologies and comorbidities such as traumatic brain injury (TBI) and cognitive dysfunction, toward more personalized medicine and prevention; and (3) translational studies and clinical trials built upon well-established European consortia.
authors.affiliation: Neurology Department and ICM-A-IHU, Salpêtrière Hospital, Paris, France.
authors.forename: Michel
authors.initials: M
authors.lastname: Baulac
authors.affiliation: SEIN - Epilepsy Institute in the Netherlands, Heemstede, The Netherlands.
authors.forename: Hanneke
authors.initials: H
authors.lastname: de Boer
authors.affiliation: Department of Epileptology, University of Bonn, Bonn, Germany.
authors.forename: Christian
authors.initials: C
authors.lastname: Elger
authors.affiliation: Epilepsy Ireland, Dublin, Ireland.
authors.forename: Mike
authors.initials: M
authors.lastname: Glynn
authors.affiliation: Kuopio Epilepsy Center, Kuopio University Hospital, Kuopio, Finland.|Department of Neurology, University of Eastern Finland, Kuopio, Finland.
authors.forename: Reetta
authors.initials: R
authors.lastname: Kälviäinen
authors.affiliation: International Bureau for Epilepsy, Dublin, Ireland.
authors.forename: Ann
authors.initials: A
authors.lastname: Little
authors.affiliation: Department of Clinical Pharmacology and Therapeutics, The University of Malta, Msida, Malta.
authors.forename: Janet
authors.initials: J
authors.lastname: Mifsud
authors.affiliation: Department of Internal Medicine and Therapeutics, C. Mondino National Neurological Institute, University of Pavia, Pavia, Italy.
authors.forename: Emilio
authors.initials: E
authors.lastname: Perucca
authors.affiliation: Department of Neurology, A.I. Virtanen Institute for Molecular Sciences, University of Eastern Finland, Kuopio, Finland.
authors.forename: Asla
authors.initials: A
authors.lastname: Pitkänen
authors.affiliation: Department of Clinical Neurosciences, CHUV, Lausanne, Switzerland.
authors.forename: Philippe
authors.initials: P
authors.lastname: Ryvlin
mesh_terms: D026683:Advisory Committees; D035843:Biomedical Research / Q000379:methods; D001921:Brain / Q000254:growth & development / Q000473:pathology; D003226:Congresses as Topic; D004827:Epilepsy / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D005060:Europe / Q000453:epidemiology; D006291:Health Policy; D006801:Humans; D038622:Internationality; D058028:Research Report
keywords: Advocacy; Biomarkers; Cure; Epilepsy; Epileptogenesis; European Commission; Horizon 2020; Research; Treatment