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Risk Factors for Sudden Unexplained Death in Epilepsy

NYU Langone Health · NCT01662453

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
800
US sites recruiting
1
Study start
June 2011
Record last updated
June 4, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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.

Conditions: SUDEP

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

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.

Recruiting US locations

  • NYU Comprehensive Epilepsy Center

    New York, NY 10016

    Site contact: Juliana Laze · 646-558-0835 · Juliana.laze@nyulangone.org

Study contacts (from the official record)

  • Abigail Laze · 646-558-0835 · Juliana.laze@nyulangone.org
  • Abigail Straight · 646-558-0848 · Abigail.straight@nyulangone.org
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Risk Factors for Sudden Unexplained Death in Epilepsy (NCT01662453) | Bored Studies