The identification of genetic risk factors that predispose an individual to epilepsy and to sudden death
(Baylor College of Medicine, Houston, Texas, USA)

SUDEP is a catastrophic complication of epilepsy and its mechanism is not fully understood.  There is evidence that genetic risk factors may predispose an individual to epilepsy and to SUDEP.   Read about epilepsy and genetics.

Dr Goldman is a neurologist and specialist in the field of epilepsy.  She and her colleagues at the Department of Neurology, Baylor College of Medicine, are conducting research to identify such genetic risk factors, with the ultimate goal of developing treatments and interventions that will prevent SUDEP.


The STOP SUDEP RESEARCH PROGRAM has three components:

  1. SUDEP case repository;
  2. brain and postmortem tissue banking; and
  3. molecular research on SUDEP mechanisms and risk factors.


This program is supported by funding from the National Institute for Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH). The genetic repository and registry are components of the multiple centered NINDS-funded Center for SUDEP Research (CSR).




If your loved one has died as a result of their seizure disorder, you can help these investigators by consenting to the transfer of a blood sample or small piece of fresh/frozen tissue from the coroner to the study.  There is no cost to you.

To learn more or get involved, please email
or phone: 713-798-0980.



Dr Goldman and her colleagues very much appreciate your consideration of their research.  Your support of their efforts is extremely important.  It is a contribution towards a better understanding of epilepsy and towards the future design of preventative strategies that will, hopefully, eliminate unnecessary loss of lives due to SUDEP.

Source: Correspondence with Dr Alica Goldman, June 2015

In October 2009, the group reported finding the first gene that might explain SUDEP:

"Marker for SUDEP" webcast, Jeffrey Noebels, Epilepsy Pipeline Update Conference (Feb 26, 2010)
Baylor College of Medicine's
news release (Oct 14)
Reuters UK's
news article (Oct 14)
Epilepsy Research UK's
news coverage (Nov 18)

In April 2010, a second one was identified:

Epilepsy Research UK's news coverage (Apr 21)
ABC13 video coverage (Apr 14)
Baylor College of Medicine news release (Apr 13)
Society for Neuroscience
news release (Apr 13)

In October 2011, Baylor College of Medicine was awarded a $1.4 million grant by the NINDS:
to organize a national research consortium to study SUDEP.

The Gazette news coverage (Oct 25)

Logo: Stop SUDEP

Please consider helping research by donating your loved one's blood samples and tissues for further investigation.  In most cases the samples need to be fresh, as the preserving solution may interfere with results.  So, if this is something you are contemplating, we urge you to contact the study or us at SUDEP Aware as soon as possible, to avoid disappointment.