“SUDEP refers to the sudden, unexpected death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy.”
Awareness is the first step in finding the cause and prevention of SUDEP.
The Center for SUDEP Research (CSR) is a National Institute for Neurological Disorders and Stroke (NINDS) funded Center Without Walls for Collaborative Research in the Epilepsies.
This milestone-driven collaboration is composed of researchers from 14 institutions across the United States and Europe and brings together extensive and diverse expertise to understand Sudden Unexpected Death in Epilepsy Patients (SUDEP).
The CSR's scientists and physicians investigate and elucidate these links with their expertise in molecular biology, genetics, histopathology, electrophysiology, brain imaging, data analysis, and more. The team will identify the molecular and structural brain abnormalities underlying SUDEP, utilize these discoveries to identify features that could predict and identify those at risk of SUDEP, and hone in on those targets for the development of potential therapeutic interventions.
Overall, this investment by NINDS over nearly five years promises to catalyze research on SUDEP and dramatically enhance our understanding of this poorly understand and devastating phenomenon.
The CSR brings together leading investigators, clinical and basic science projects, multidisciplinary technology and advanced resources to form a collaborative network dedicated to significantly reducing SUDEP mortality. This spirit of collaboration includes timely sharing of ideas without compromising intellectual autonomy, ownership, and credit.
Members sign the Charter Agreement and agree to a principle of transparency, with particular regard to future grant applications leveraged by CSR, and forthcoming peer reviewed publications, conference presentations, press releases, and other materials arising directly from CSR activities.
A key strategy is to provide each CSR investigator and research group with regular, expedited access to expertise and knowledge as well as core facilities that may not otherwise be available to them.
CSR members are encouraged to share any relevant activities that do not directly arise from CSR resources, cores or scientific projects. Our goal is a broader collaboration within the scientific community to advance knowledge about SUDEP.
Jeffrey L. Noebels, MD, PhD
CSR Executive Committee
The goal of CSR Partners is to foster collaboration and communication between the investigators working within the Center for SUDEP Research and non-profit, academic, industry and government partners.
This milestone-driven collaboration is composed of researchers from 14 institutions across United States and Europe and brings together extensive and diverse expertise to understand SUDEP, or sudden unexpected death in epilepsy.