Research priorities in epilepsy for the next decade—A representative view of the European scientific community: Summary of the ILAE Epilepsy Research Workshop, Brussels, 17–18 January 2008

This document expresses a representative view of the European scientific community involved in epilepsy research. It is the result of action taken by the International League Against Epilepsy (ILAE) and its Commission on European Affairs (CEA). The ILAE is the worldwide professional organization that represents scientists and clinicians working in epilepsy in more than 98 countries worldwide. This paper lists what scientists have achieved in epilepsy research so far and identifies further challenges in epilepsy research. It names the six most relevant and urgent priorities, discusses the problem in each of the six areas, and identifies the direction future research should take. Epilepsy is a serious and common chronic neurologic disorder characterized by recurrent seizures, which are caused by abnormal synchronized neuronal discharges. As many as 6 million people in Europe currently have active epilepsy. This has major implications not only for health, but also for independent living, education and employment, mobility, and personal relationships. The term epilepsy encompasses a vast and heterogeneous ensemble of syndromes and diseases, differing in types of seizures, age at onset (with high incidence peaks in childhood and old age), and etiology, which can be acquired and ⁄ or genetic. Epilepsy is an expensive disorder. The total European health costs associated with epilepsy have been estimated to be €15.5 billion, with indirect costs accounting for more than half (€8.6 billion) of this amount. From direct health care costs of €2.8 billion, the outpatient care comprised the largest part (€1.3 billion). Direct nonmedical cost of epilepsy was estimated to be €4.2 billion and that of antiepileptic drugs €400 million. The total cost per epilepsy patient was €2,000–11,500 and the estimated cost per European inhabitant was €33 (EUCARE, 2003; AndlinSobocki et al., 2005; Pugliatti et al., 2007). The prognosis and quality of life of a person with epilepsy varies considerably. It depends on the type and severity of the person’s seizures, response to drug treatment, coexisting developmental and cognitive disorders, other comorbidities, and the occurrence of episodes of status epilepticus. Though a large number of antiepileptic drugs (AEDs) that suppress or prevent the seizures are now available, about 30–40% of the patients, children as well as adults, remain resistant to drug treatment. So far, we have no treatments that prevent the development of epilepsy (‘‘antiepileptogenic drugs’’) or modify the detrimental course of the disorder (‘‘disease-modifying agents’’). We must invest in those research areas that will provide the required understanding of the fundamental mechanisms of epilepsy and advance the treatment of epilepsy to the next level. It is no longer enough to try to prevent the symptoms of the disease. We must now attempt to cure the disease and prevent its development in patients who are at risk. We used the following method to identify the research priorities in epilepsy listed in this document. Initially, we asked all the 42 chapters in the European region of the ILAE and group leaders in clinical and basic epilepsy research what their most important research priorities were. Subsequently, a task force of the CEA met in Brussels in January 2008, discussed these, and identified the top research priorities. These top six priorities and the scientific reasons behind them are discussed herein.