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Hidden heart genes may trigger sudden death in epilepsy patients

NCT ID NCT02824822

Knowledge-focused Sponsor: Mayo Clinic Source: ClinicalTrials.gov ↗

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Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Jun 26, 2026

Summary

This study from Mayo Clinic looks for genetic heart conditions in people with epilepsy that might raise the risk of sudden unexpected death (SUDEP). Researchers will analyze DNA from 600 adults aged 18-50 with epilepsy or related symptoms, plus their blood relatives. The goal is to find inherited heart rhythm disorders that could be silently contributing to fatal seizures.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could help identify epilepsy patients at highest risk for sudden unexpected death, potentially leading to targeted monitoring or preventive strategies.
What could go wrong
This is an observational genetic study, not a treatment trial. It may not find clear genetic links, and any findings would need further research before changing clinical practice.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 600 people

The number the study aims to enrol. It can still change while the study runs.

Start date

May 2016

Expected to finish

Dec 2031

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Men and women diagnosed with epilepsy or seizures or unexplained syncope and blood relatives.

Ages

18 to 50 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Adults ages 18 - 50 with a diagnosis of epilepsy or seizures, or syncope or drowning or cardiac arrest or sudden death or an abnormal ECG suggestive of an arrhythmia * Blood-relatives (Aged 18+) of a patient with a history of epilepsy, seizure, cardiac arrest, sudden death, drowning, syncope or arrhythmia Exclusion Criteria: * Those who are unable to provide written consent. * Prisoners (vulnerable population) * Seizures secondary to ischemic events * Traumatic brain injury resulting in seizures * History of cranial surgery * History of brain tumor

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Conditions

The condition(s) this trial relates to.

cardiomyopathy Channelopathies Death, Sudden, Cardiac epilepsy long QT syndrome Polymorphic Catecholaminergic Ventricular Tachycardia Sudden Unexpected Death in Epilepsy Syncope syncope, familial vasovagal visual epilepsy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Cardiomyopathies Channelopathy Epilepsy Seizures Syncope

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

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