Medical professionals are crucial partners in the success of the North American SUDEP Registry (NASR). To achieve our goal of collecting high-quality clinical information, tissue, and DNA from as many SUDEP cases as possible, family members and guardians of patients who suffer a SUDEP (or other epilepsy-related mortality that may be SUDEP) must first be aware of the registry. Our success will depend on medical professionals such as yourself as we attempt to increase awareness of SUDEP and the NASR. Your ability to effectively communicate (how and why) the importance and ease of enrolling in the registry is crucial to our success.
SUDEP Epidemiology & Background
SUDEP is a descriptive term for a category of unexpected deaths in people with epilepsy or epilepsy-related conditions. Little is known about SUDEP and its mechanisms and risk factors.
Sudden Unexplained Death in Epilepsy:
The North American SUDEP Registry aims to cast a wide net for epilepsy-related mortality. In addition to gathering data on SUDEP, data on other causes of epilepsy-related mortality can help identify other factors that can be targeted to increase survival. Tissue procured during the study can be used as control samples for SUDEP cases and also provide tissue and DNA to help define the mechanisms underlying human epilepsy.
We hope to provide medical professionals with an easy, organized way to refer participants to the Registry. More information is below.
- is the sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in a person with epilepsy
- occurs in benign circumstances
- occurs with or without evidence of a seizure
- excludes documented status epilepticus (seizure of duration of 30 minutes or longer, or seizures without recovery in between)
- a postmortem examination does not reveal a cause of death.
We cannot stress enough the importance of discussing SUDEP with your patients. The American Epilepsy Society Task Force recommends that SUDEP be part of a comprehensive education about their disease for all patients with epilepsy. This education extends to the family members and caregivers of epilepsy patients as well.
You may be concerned that patients will experience feelings of fear or loss of control upon learning about SUDEP, but discussing SUDEP need not cause distress. When talking with patients whose epilepsy (or syndromes such as childhood absence epilepsy) is well controlled, the focus can be on reassuring them that they are at low risk for SUDEP. For patients who may have increased risk factors for SUDEP, such as those with ongoing tonic-clonic seizures, an understanding of these risks may improve medication compliance and influence treatment decisions in a positive way.
Discussing SUDEP with your patients
SUDEP risk can vary over 100 fold in people with epilepsy – for example, children with benign epilepsies are at extremely low risk while people who continue to have seizures despite epilepsy surgery are at the highest risk. How you discuss SUDEP with your patients should be tailored to the individual and their risks. Regardless of your patients' risks, when discussing SUDEP, talk about how little is known about its mechanisms and prevention. Introduce the Registry as an effort on the part of doctors and researchers to fill the knowledge gap that exists around SUDEP.
Referring families to NASR
Referring families to the Registry is easy. If you had not already done so, you can inform family members of the Registry upon hearing of the untimely death of one of your patients. The benefits of referring families to NASR are numerous, including helping to foster a better understanding of SUDEP, and giving families access to numerous resources and support services. While we encourage families to visit our website and contact our study team directly, medical professionals can refer families to NASR in the following ways:
If you cannot complete the form with the family member, you can still pass his or her contact information to NASR. You can email email@example.com with the next-of-kin's information and a statement indicating the family member is aware of NASR and has authorized you to forward their contact information to our staff members.
For medical examiners, coroners, and forensic pathologists
One of the primary goals of the NASR is to correct the underreporting of SUDEP, and to accurately reflect the incidence of SUDEP in the population of individuals with epilepsy. We hope to increase SUDEP education and awareness in medical examiners, coroners, and forensic pathologists, who are all important partners in our efforts.
When to consider SUDEP in a decedent
SUDEP should be considered in a decedent if sudden, unexpected, nontraumatic death has occurred in an individual with epilepsy, in which a postmortem examination does not reveal a cause of death. Death must have occurred in benign circumstances, with or without evidence of a seizure, and without documented status epilepticus (seizure of duration of 30 minutes or longer, or seizures without recovery in between).
Criteria for determining SUDEP / tissue donation
To determine SUDEP, the registry uses several criteria including epilepsy/seizure history and other medical history, circumstances surrounding the patient's death, family medical history, and information about the patient's lifestyle. If the death has occurred within 72 hours of the family calling the registry, the decedent may be a candidate for tissue donation. If the family of the deceased agrees to tissue donation, they must give signed consent, whereupon the procurement of donated tissue can be coordinated with the appropriate medical examiner or coroner's office.
When, how, & why to refer families to NASR
In the case of an unexpected death in a patient with epilepsy, you can inform family members of the Registry—even before an autopsy is performed and SUDEP is verified. Enrolling those patients whose deaths are ultimately found to have an explanation other than SUDEP will provide valuable control material for future studies. It will also provide important material to better understand the causes and consequences of epilepsy.
Referring families to the Registry is easy. You cannot call for them but you can give them the number to call (855-432-8555), the email address (firstname.lastname@example.org), and the address of this website (www.sudepregistry.org). The benefits of referring families to the Registry are numerous, including helping to foster a better understanding of SUDEP, and giving families access to numerous resources and support services.