HELP US DISCOVER THE CAUSES OF SUDEP

 


What is SUDEP? 

Sudden Unexplained Death in Epilepsy (SUDEP) refers to a category of deaths in people with epilepsy in which there is no other clear cause of death (for example, cancer, stroke, known heart disease, or an accident related to a seizure). Learn more.


Families

Families affected by a loved one's SUDEP-related death may feel overwhelmed with sorrow and confusion. You are not alone in your grief — other people who have been through similar experiences are out there, and are willing to be a support to you and your family.

Medical Professionals

Clinicians, medical examiners, and coroners are crucial partners in the success of the North American SUDEP Registry (NASR). To learn more about how healthcare providers can refer to NASR, please click here

Research & Tissue Donation

NASR collects information about people with epilepsy who have died unexpectedly to determine if they died from SUDEP or other causes. We collect DNA, brain, and other tissues for scientific studies about the causes of SUDEP.


Why participate in NASR?

 

Help us learn more about this disease. We hope 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.


What is Involved?

 

A phone interview (45-60 minutes long), will be conducted at your convenience. Consent must be given for the release of medical information from the deceased's medical providers. While we welcome whole-brain donations when available, brain and tissue donation is not necessary to participate. Any and all clinical information is incredibly valuable for our registry. 


How can I participate?

 

You can arrange a phone interview by calling us at:  855-432-8555

Or you can email us at: info@sudep-registry.com