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Revision as of 16:32, 17 November 2014 by Jeno (Talk | contribs)

CSR Overview


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 tackle 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.

The rate of sudden unexpected death in people with epilepsy is as much as 24 times higher than the rate of unexpected death in the general population, with an estimated 2,750 cases of SUDEP in the U.S. alone every year. Recent research findings for the mechanisms underlying SUDEP have pointed to a complex pathologenetic processes involving changes to the brain in people with epilepsy that disrupt the autonomic nervous system, leading to abnormalities in brain function, heart rate, rhythm, and respiration.

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.

CSR Organization

The Center for SUDEP Research governance is made possibe through a partnership with NIH NINDS and is comprised of an Executive Committee and a Steering Committee. As a recipient of a large multi-discipline, multi-center grant, The Center for SUDEP Research is advancing understanding of sudden unexpected death in epilepsy under the guidance of both its Executive Committee and Steering Committee.

NIH and NINDS

The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). The mission of NINDS is "to reduce the burden of neurological disease—a burden borne by every age group, every segment of society, and people all over the world". The NINDS accomplishes this goal by supporting research that is timely and translational whenever possible.

Steering Committee

The Steering Committee will consist of the corresponding Principal Investigator from each Core project, the Directors, and the NINDS Scientific Program Officer. The chairpersons will be the CSR Directors. Each member of the Steering Committee will have one Steering Committee vote. The Steering Committee has primary responsibility for the establishment of priorities, development of common protocols, and review of progress for the center.
John Belmont, MD PhD

Alica Goldman, MD, PhD

Ronald Harper, PhD

Samden Lhatoo, MD, FRCP

Jeffrey L. Noebels, MD, PhD

Jack Parent, MD

George Richerson, MD, PhD

Maria Thom, MD

GQ Zhang, PhD

Executive Committee

The Executive Committee (EC) will consist of 8 voting members: the CWW Directors (in alphabetical order PIs Dr. Sam Lhatoo and Dr. Jeffrey Noebels), NINDS Scientific Program Officer (Dr. Vicky Whittemore), NINDS Administrative Program Officer (Dr. Brandy Fureman), two additional NIH staff, and two rotating members (one basic science, one clinical) chosen from the U01 corresponding PIs. Additional NIH Program staff members will be invited to participate as needed as non-voting members. Rotating members will serve up to twoyear terms and will be nominated on an annual basis by the EC, and confirmed by vote of the Steering Committee.
Kristen Burns, MD

Brandy Fureman, PhD

Katrina Gwinn, MD

Sam Lhatoo, MD, FRCP

Jeffrey Noebels, MD, PhD

Vicky Whittemore, PhD

CSR Charter

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.

CSR Members

CSR Cores and Projects