Risk Factors for Sudden Unexplained Death in Epilepsy
Risk Factors for Sudden Unexplained Death in Epilepsy
The main purpose of this study is to develop a North American registry for SUDEP cases;
 requesting family members of epilepsy patients who died suddenly of unclear causes (SUDEP) to
 contact the study team. The family members who decide to participate in the study will be
 asked to complete a brief telephone interview about their loved one's epilepsy and seizure
 history and the circumstances of his or her death. If the death has occurred within the past
 24 hours, and the family is willing to consider donating tissue to the study, the subject
 will be transferred to the Autism Tissue Program, and the remainder of the phone interview
 will be conducted at a later time.

 In addition to the phone interview, the family will be asked to provide access to the
 deceased's medical records. Any costs involved in obtaining medical records will be covered
 by the study, and all medical information will remain completely confidential.
SUDEP stands for sudden unexplained death in epilepsy; a witnessed or unwitnessed,
 non-traumatic and non-drowning death occurring in benign circumstances, in a person with
 epilepsy with or without evidence of a seizure and excluding documented status epileptics
 (seizure duration of 130mins or longer, or seizures without recovery in between), in which a
 postmortem examination does not reveal a cause of death. SUDEP is not a cause of death so
 much as it is a descriptive term for a category of unexplained deaths in people with epilepsy
 or epilepsy-related conditions. Little is known about SUDEP and its mechanisms and risk
 factors.

 One of the main objectives of this study is to investigate the role of various risk factors
 in the development of sudden unexplained death in patients with epilepsy, with a particular
 focus on the role of antiepileptic medications. In addition, we want to elucidate the
 pathophysiologic mechanisms leading to SUDEP.
Inclusion Criteria Sudep Group Subjects diagnosed with epilepsy whose cause of death was
 sudden and unexplained, and whose families are willing to participate, will be included in
 the study.

 Control Group For the control group, we will include any patient diagnosed with epilepsy
 currently in the care of the NYU Comprehensive Epilepsy Center, willing and able to
 participate in the study.