Investigating risk factors for sudden unexplained death in epilepsy
Official title: Risk Factors for Sudden Unexplained Death in Epilepsy (SUDEP)
Run by NYU Langone Health · NCT01662453 · Data updated 2026-11-12
This study is trying to gather information from families of people with epilepsy who have died suddenly to see what might have contributed to those deaths and how medications could play a role.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 800 (estimated) |
| Sponsor | NYU Langone Health Academic / other |
| Locations | 1 site (New York, New York) |
| Status | Recruiting |
| Started | June 2011 |
| Main results expected | September 2027 |
| Study ends | September 2027 |
| Registry record updated | June 4, 2026 |
| Trial ID | NCT01662453 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include family members of epilepsy patients who have experienced sudden unexplained death.
✕Probably not a fit
Patients who have not experienced sudden unexplained death or whose families are unwilling to participate may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to create a North American registry for cases of sudden unexplained death in epilepsy (SUDEP). Family members of epilepsy patients who have died suddenly and without clear causes are invited to participate by completing a telephone interview regarding their loved one's epilepsy history and circumstances surrounding the death. The study also seeks access to the deceased's medical records, with all costs covered and confidentiality ensured. Additionally, the study will explore the role of antiepileptic medications and other risk factors associated with SUDEP.
Why it matters
Potential benefit: If successful, this study could enhance understanding of SUDEP and potentially lead to improved prevention strategies for patients with epilepsy.
How similar studies have gone: While there have been studies on SUDEP, this specific registry approach focusing on family interviews and medical records is relatively novel.
Who can join: the full rules
Show full inclusion / exclusion 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.
Where it's running
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NYU Comprehensive Epilepsy Center
New York, New York, United States Recruiting
Study contacts
- Principal investigator: Orrin Devinsky, MD — NYU School of Medicine
- Study coordinator: Abigail Laze
- Email: Juliana.laze@nyulangone.org
- Phone: 646-558-0835
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Hypothalamus structure and heart autonomic changes in drug-resistant epilepsy
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Intracranial Mapping of Cortical Control of Breathing in Epilepsy
This study tests whether targeted brain area activity during SEEG can reveal how the cortex helps regulate breathing in people with drug-resistant epilepsy.
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Understanding the causes of Sudden Unexpected Death in Epilepsy
This study is trying to understand why some people with epilepsy suddenly die by looking at how seizures affect their breathing and heart function over ten years.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.