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 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 are crucial partners in the success of the North American SUDEP Registry (NASR). To achieve our goal of high quality clinical information, we collect tissue and DNA samples on as many cases of SUDEP as possible.
The purpose of the SUDEP Registry is not to collect information about peole with epilepsy who have died unexpectedly, but to determine if they died from SUDEP or other causes, and to collect DNA, brain or 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?
An initial, brief 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. Forms can be found here.
How can I participate?
You can arrange a phone interview by calling us at: 855-432-8555
Or you can email us at: email@example.com