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 email@example.com.
HERO TRIAL FINDER
Human Epilepsy Research Opportunities (HERO): Learn about the value of clinical trials and find clinical trials that could benefit you or a loved one at www.epilepsyhero.org. You can search for epilepsy-related trials by geography and the age of the patient.
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.