This study aims to understand why some people with epilepsy die suddenly and unexpectedly, a condition called SUDEP (Sudden Unexplained Death in Epilepsy). Researchers are building a registry of SUDEP cases in North America. They are looking for family members of individuals who died from SUDEP to share information. If you choose to participate, you would complete a phone interview about your loved one's epilepsy and seizure history, and the circumstances of their death. The study also asks for access to their medical records. The goal is to identify risk factors for SUDEP and understand the biological reasons behind it, with a focus on how anti-epileptic medications might play a role. This is an observational study, meaning no new treatments are being tested.

Study design

This is an observational study aiming to enroll 800 participants. It involves two groups: families of individuals who died from SUDEP and living epilepsy patients.

What's involved

Participants will complete a brief telephone interview and provide access to the deceased's medical records. If death occurred within 24 hours and the family is willing, tissue donation may be considered.

Compensation

Not stated in the trial record.

Follow-up

The primary endpoints, including the incidence and risk factors for SUDEP, will be measured at 3 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.