Families coping with a loved one's SUDEP-related death may feel overwhelmed with sorrow and confusion. These feelings may be compounded by a lack of information about SUDEP and what has happened to your loved one. 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. The resource page of this website contains links to various resources to help you and your family get through this trying time. In the midst of dealing with the stress of losing a loved one, medical research is likely the last thing you and your family want to think about. However, if there is a chance that your loved one's death may be related to SUDEP, it is important to report it as soon as possible. If the death has occurred within the last 72 hours, and the family has decided to donate brain tissue to the study, we encourage them to call us at 855-432-8555 as soon as possible. Someone will be available to take these urgent calls and to walk you through the process at all times, 24/7. Tissue donation is a crucial element in researching and understanding SUDEP. You can find more information about medical research and tissue donation here.
To include your family member in the study, please contact us at the phone number below. You will be asked to complete a brief phone interview about your loved one's epilepsy and seizure history, and the circumstances of his or her death. If the death has occurred within the past 72 hours, and the family is willing to consider donating tissue to the study, you will be transferred to a brain donation affiliate, and the remainder of the phone interview will be conducted at a later time. If more than 72 hours have passed, we still urge you to contact us for a screening interview, as there are other important ways to be part of the registry.
We will also be asking for permission to access the deceased's medical records. Any costs involved in obtaining medical records, tissues, or other biological materials will be covered by the study, and all medical information will remain completely confidential.
To arrange a study enrollment interview, please contact us here:
(855) 432-8555 firstname.lastname@example.org www.sudepregistry.org
If you have additional questions, please visit our FAQ page.