Risk Factors for Sudden Unexplained Death in Epilepsy (SUDEP)

Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: t
View:

• 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.

Locations
United States
New York
NYU Comprehensive Epilepsy Center
RECRUITING
New York
Contact Information
Primary
Juliana Laze
Juliana.laze@nyulangone.org
646-558-0835
Backup
Marlene Cosme
marlene.cosme@nyulangone.org
646-558-0840
Time Frame
Start Date: 2011-06
Estimated Completion Date: 2026-09
Participants
Target number of participants: 800
Treatments
SUDEP Group
The SUDEP group refers to epileptic patients that had a sudden unexplained death; excludes trauma, drowning, status epilepticus, or other known cause, but there is often evidence of an associated seizure.
Control Group
We will recruit living patients with epilepsy for the control group. In particular, epileptic patients with Dravet Syndrome of Idic 15.
Sponsors
Leads: NYU Langone Health

This content was sourced from clinicaltrials.gov