SUDEP Research Study

BAYLOR COLLEGE OF MEDICINE

Sudden Unexplained Death in Epilepsy Research

 Turning Individual Tragedy into Personal Legacy

Sudden Unexplained Death in Epilepsy or SUDEP is a catastrophic complication of epilepsy. The mechanism of SUDEP is not fully understood. There is evidence that genetic factors may predispose an individual to epilepsy and to SUDEP.

Dr. Goldman is a neurologist specialized in the field of epilepsy. She and her colleagues at The Department of Neurology at Baylor College of Medicine are conducting a research study called “Ion Channels in Epilepsy” The aim of the research is the identification of the genetic risk factors that predispose an individual to epilepsy and to sudden death.

This study is funded by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Stroke (NINDS).

In order to perform this research, the investigators need blood sample or a small piece of fresh tissue from the patients that died as a result of their seizure disorder.

If you would like to learn more about this study or for participation, please contact Dr. Alica Goldman at (email: or phone: 713-798-0980).

We very much appreciate your consideration of our research. Your support of our efforts is very important. It is a contribution towards better understanding of epilepsy and towards future design of preventative strategies that will hopefully eliminate unnecessary loss of lives due to sudden death in epilepsy (SUDEP).

 

What can I do for support after the death of a loved one?

Contact any of the organizations with websites listed below or contact your local Epilepsy Foundation affiliate http://www.epilepsyfoundation.org/aboutus/AffiliateLookup.cfm

 

Where else can I get more information about SUDEP?

www.sudep.org – Epilepsy Bereaved

www.epilepsy.com – Epilepsy.com

www.sudepaware.org – SUDEP Aware

 

Reference

LeestmaJE, AnnegersJF, BrodieMJ, etal. Sudden unexplained death in epilepsy: observations from a large clinical development program. Epilepsia 1997; 38: 47-55.

Torbjörn T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. The Lancet, 2008, Volume 7: 1021-1031.

Surges R, Thijs R, Tan H, Sander J. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. www.nature.com/neurology September 2009, Volume 5: 492-504

 

For further reading:

Case-control study of SUDEP. Langan, Y., Nashef, L., & Sander, J.W.; Neurology 64, 1131-1133 (2005)

‘Molecular Trigger’ For Sudden Death In Epilepsy Found.  ScienceDaily. Baylor College of Medicine (2009, October 15).

Mortality Risk in an Adult Cohort with Newly Diagnosed Unprovoked Epileptic Seizure: A Population-Based Study, Hans Lindsten, LENNART Nystrom and Lars Forsgren, Epilepsia, 41(11): 1469-1473, 2000

Studies are still being conducted and much more research is needed to answer the many questions which remain about SUDEP. The questions and answers listed above address some of the more basic and frequently asked questions related to SUDEP. For answers specific to your experience with epilepsy, please refer to your physician.