• What is SUDEP? How many people does it affect each year?

    In the United States, there are 2.2 million people living with epilepsy. We estimate that approximately 3300 in US & Canada are affected by SUDEP — Sudden Unexpected Death in Epilepsy — annually. 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). Unfortunately, not much is currently known about SUDEP.

  • What is the purpose of the study? What are you interested in learning or understanding about SUDEP?

    We are interesting in understanding the clinical risk factors for SUDEP in people with epilepsy. Are there ways for us to predict who is at high risk for SUDEP? Are there prevention strategies or other things patients can do to reduce their risk? Are there markers on tests such as EKG, EEG or MRI that can tell us about SUDEP mechanisms and risk? These are the kinds of questions we hope to be able to answer through the study.

  • Why is so little known about SUDEP?

    The incidence of SUDEP is relatively rare in the population of people with epilepsy. It is most likely under-recognized and thus under-reported by medical examiners and coroners. Autopsy rates in general are quite low in the United States, and thus another reason why incidents of SUDEP might be under-reported. 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.

  • Who can be included in the SUDEP registry, and how?

    In order to determine if your family member can be included in the registry, you must complete a study enrollment interview by phone. The phone interview will include questions about the family member's history of epilepsy or seizure disorder and the circumstances of their death.

    For the purposes of the study, we hope to collect data on as many epilepsy-related deaths as possible. Even if you believe your family member's death may not have been related to SUDEP, we encourage you to call us to determine your family member's eligibility. Non-SUDEP cases may be suitable for inclusion in future studies, and therefore would be helpful. For a phone interview to determine if your family member can be included in the study, please call 855-432-8555.

    If the death occurred less than 72 hours ago, there is also the possibility of donating tissue to the study. In such cases, if the family of the deceased is willing to consider tissue donation, they should call 855-432-8555 as soon as possible.  Calls are answered 24/7 and are forwarded to a physician if placed after-hours.  Because tissue donation is both important and time-sensitive, we will work with the family to obtain signed consent forms as soon as possible and the study enrollment interview will be continued at a later time.

  • What is involved in participating in the study [registry]?

    A phone interview (45 minutes long), will be conducted at your convenience. To arrange a phone interview to determine if your family member can be included in the study, please call 855-432-8555.

    Consent must be given for the release of medical information from the deceased's medical providers, including office notes, hospital records, and results of MRIs and EEGs. Any costs related to obtaining and shipping medical records will be covered by the study. All medical records will remain completely confidential, and will be reviewed and stored in an anonymized fashion. Consent Forms can be downloaded here and Release Forms can be downloaded here.

    If, during the initial interview, it is determined that tissue donation is an option, family members will be asked to sign consent forms to allow permission to obtain it. Tissue donation is not required for participation in the study, and family members can limit what kinds of tissue are donated. There are no associated costs to participants for tissue donation. For more information regarding the tissue donation process, please call us at 855-432-8555.

  • What kinds of data are you collecting for the study?

    We are collecting the following kinds of information about people whose deaths are SUDEP-related: general medical history, information about the deceased's epilepsy diagnosis and history, any medications they were taking, treatments they were undergoing, information about their lifestyle and living environment, results (and copies, if available) of diagnostic tests such as MRI, EEG, EKGs, and details regarding the circumstances surrounding the patient's death.

  • What kinds of tissue are you collecting for the study?

    Tissue from the deceased's brain, heart, and liver may be collected, although family members will have the opportunity to decide which kinds of tissue, if any, are donated to the study. If tissue is donated, it will be stored at the NYU Biorepository or the Alzheimer's Disease Center Brain Bank at NYU, depending on the type of tissue.  It will be distributed to qualified scientists who are interested in understanding the causes of epilepsy and mechanisms of SUDEP.

  • Do I have to donate my family member's tissue in order for them to participate in the study?

    No, you do not need to be willing to donate tissue to participate in the registry. However, because timing is critical for tissue donation, if the death has occurred within the last 72 hours and the family is willing to consider tissue donation, we will complete enrollment in the registry at a later time.  We will work with the family to obtain signed consent forms as soon as possible and can then work with the medical examiner or coroner directly.

    For a phone interview to determine if your family member can be included in the study, please call 855-432-8555.

  • My family member died months or years ago, can they still be included?

    As long as they meet the other criteria of the study as determined during the phone interview and your family member's medical records are still available for review, SUDEP cases may be enrolled at any time. For more information, please call 855-432-8555.

  • That's a lot of information. All I want to know is how to arrange a phone interview to see if my family member can participate in the study.

    For a phone interview to determine if your family member can be included in the study, please call 855-432-8555.