Risk Factors for Sudden Unexplained Death in Epilepsy
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology |
| Therapuetic Areas: | Neurology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 3/27/2019 |
| Start Date: | June 2011 |
| End Date: | September 2019 |
| Contact: | Patricia Tolete |
| Email: | Patricia.Tolete@nyulangone.org |
| Phone: | 646-558-0818 |
Risk Factors for Sudden Unexplained Death in Epilepsy (SUDEP)
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.
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.
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.
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