Investigating risk factors for sudden unexplained death in epilepsy
Risk Factors for Sudden Unexplained Death in Epilepsy (SUDEP)
NYU Langone Health · NCT01662453
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 |
|---|---|
| Enrollment | 800 (estimated) |
| Sex | All |
| Sponsor | NYU Langone Health (other) |
| Locations | 1 site (New York, New York) |
| Trial ID | NCT01662453 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include family members of epilepsy patients who have experienced sudden unexplained death.
Not a fit: Patients who have not experienced sudden unexplained death or whose families are unwilling to participate may not benefit from this study.
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 performed: While there have been studies on SUDEP, this specific registry approach focusing on family interviews and medical records is relatively novel.
Eligibility criteria
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 this trial is running
New York, New York
- NYU Comprehensive Epilepsy Center — New York, New York, United States (RECRUITING)
Study contacts
- Principal investigator: Orrin Devinsky, MD — NYU School of Medicine
- Study coordinator: Juliana Laze
- Email: Juliana.laze@nyulangone.org
- Phone: 646-558-0835
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: SUDEP, epilepsy, seizures, mortality, sudep, risk factors