STOP SUDEP RESEARCH PROGRAM
The identification of genetic risk factors that predispose an individual to epilepsy and to sudden
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:
- SUDEP case repository;
- brain and postmortem tissue banking; and
- molecular research on SUDEP mechanisms and risk
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 firstname.lastname@example.org 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,
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 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)