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 to assess the risk factors and pathophysiologic mechanisms leading to sudden unexpected death in the general population of epilepsy patients. We will be collecting DNA and brain tissue for scientific studies about the causes of SUDEP.
Help us learn more about SUDEP. 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.
First step there is a brief screening to verify your eligibility, if so, we will move forward for your consent to participate in our study. Once consent is given, we will proceed with a telephone interview that will take ~30-45mins.