There are variety of efforts underway to try and understand why epilepsy and SUDEP happens, and how often. See below to read about some of them, and to learn more about how you might get involved.
NORTH AMERICAN SUDEP REGISTRY (NASR)
The sudden, unexpected loss of a loved one can be a very challenging journey. Coping can be extremely difficult, especially while so many questions about SUDEP remain unanswered. Current research is ongoing to understand how and why these deaths occur. Today, you can help people who are at risk of SUDEP by including your family member in the North American SUDEP Registry (NASR). If you would like to learn more about the NASR Project ongoing at the New York University School of Medicine, click here. Its goal is to encourage accurate recognition and reporting of SUDEP-related deaths, and to provide researchers with a body of data that will result in a greater understanding of SUDEP, its causes, and possible means of reducing patient risk. The lead for this project is Dr. Orrin Devinsky. To learn more or to become a part of the registry, call (855) 432-8555 or email at firstname.lastname@example.org.
To read a 2018 National Association of Medical Examiners (NAME) position paper published in Epilepsia and titled, Recommendations for the investigation and certification of deaths in people with epilepsy, click here.
CENTERS FOR SUDEP RESEARCH
The Center for SUDEP Research (CSR) is a National Institute for Neurological Disorders and Stroke (NINDS) funded Center Without Walls for Collaborative Research. This milestone-driven collaboration is composed of researchers from 14 institutions across the United States and Europe and brings together 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.
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. Learn more online here. The DDF is an advocacy partner to CSR.
SUDDEN DEATH IN THE YOUNG CASE REGISTRY
The work of the Sudden Death in the Young case registry is being done by National Institutes of Health (NIH), the Centers for Disease Control (CDC) and at partner centers in 18 states that are collecting information on cases of sudden death in the young, data that will inform research. These cases may involve any type of sudden death, including cases of including SUDEP. To learn more or to get involved, visit www.sdyregistry.org.
GENETIC TESTING RESEARCH:
To inquire about the Stop SUDEP Research Program ongoing at the Department of Neurology at Baylor College of Medicine, send an email to STOPSUDEP@bcm.edu. This project has three components:
- SUDEP case repository,
- Brain and postmortem tissue banking,
- Molecular research on SUDEP mechanisms and risk factors. If you would like to learn more about this study, you can call Dr. Alica Goldman at 713-798-0980.
Epilepsy Genetics Initiative (EGI)
EGI is a database created by Citizens United For Research in Epilepsy (CURE), in partnership with NINDS, to hold the genetic data of people with epilepsy. The specific type of data at play is called exome sequence data. Once these data are in the secure, confidential database, they will be analyzed regularly for causes of epilepsy. These data will also be used to drive epilepsy research. Click here to learn more.