Risk Factors for Sudden Unexplained Death in Epilepsy

Part of paid clinical trials in New York, New York.

Sponsor
NYU Langone Health
Study ID
NCT01662453
Status
Recruiting
Apply to this trial

Conditions

  • SUDEP

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Accepted

Study Details

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.

Key Dates

Start date
Jun 30, 2011
Status verified
Jun 2026
Primary completion
Sep 30, 2027
Completion
Sep 30, 2027

Study Design

Enrollment
800 participants (estimated)

Arms

  • Arm: 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.
  • Arm: Control Group
    We will recruit living patients with epilepsy for the control group. In particular, epileptic patients with Dravet Syndrome of Idic 15.

Primary Outcome Measure

- Incidence of SUDEP - Risk factors for SUDEP. [ Time Frame: 3 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
NYU Comprehensive Epilepsy CenterNew YorkNew York10016
Juliana Laze
[email protected]
646-558-0835
Orrin Devinsky, MD (PRINCIPAL_INVESTIGATOR)

Find similar trials in New York, NY

By research site
NYU Comprehensive Epilepsy Center· New York, NY

Related Studies