The creation of a virtual Center Without Walls to study sudden unexpected death in epilepsy (SUDEP) was announced by the US National Institute of Neurological Disorders and Stroke (NINDS) on Dec 8, 2014. For the epilepsy community—at that time gathered in Seattle, WA, USA, for the Annual Meeting of the American Epilepsy Society—the announcement of this new initiative signals the onset of an exciting period in epilepsy research. Large collaborative research initiatives are needed to shed light on the risk factors and mechanisms that can lead from epilepsy to premature death, and the creation of this new Center Without Walls will accelerate progress over the coming year.
Nine research teams form the new Center Without Walls, with a budget of less than US$6 million at present. Investigators will share data and resources to address SUDEP from several angles: from the study of underlying brainstem pathways to the associated respiratory and cardiac dysfunction, and from neuropathological analyses to the assessment of genetic susceptibility. NINDS should be commended for prioritising this area of epilepsy research. The risk of sudden death is about 20-times higher in people with epilepsy than in the general population. Incidence ranges from 0·09 per 1000 person-years in newly diagnosed patients to 9·3 per 1000 person-years in candidates for epilepsy surgery. However, sudden death is a major concern not only in people with pharmacologically intractable epilepsy (who have an estimated 35% lifetime risk), but also in adult patients in whom epilepsy is not fully controlled, in patients with predisposing mutations, and in children with Dravet syndrome. In the USA alone, there are about 3000 cases of SUDEP each year. Understanding the genetic, physiological, and environmental risk factors behind such increased mortality will lead to preventive strategies that can help to tackle these dismal figures.