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Heart disease detective: 1,000-Person study hunts for hidden genetic triggers of sudden cardiac death

NCT ID NCT03049254

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

What the study statuses mean

This study's is highlighted.

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Last updated Jun 27, 2026

Summary

This study is looking for new genes and blood markers linked to arrhythmogenic cardiomyopathy (AVC), a genetic heart condition that can lead to heart failure and sudden cardiac arrest. Researchers will enroll 1,000 people, including patients with AVC or unexplained cardiac arrest, and their blood relatives. By collecting medical data, images, and samples, they hope to better understand how the disease starts and progresses, which could improve diagnosis and screening for at-risk families.

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 could lead to better genetic tests and early detection methods for arrhythmogenic cardiomyopathy, potentially preventing sudden cardiac death in at-risk families.
What could go wrong
This is an observational study, not a treatment trial. It may not directly benefit participants, and findings may take years to translate into 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 1,000 people

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

Started

Feb 2018

Expected to finish

Mar 2027

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

All patients seen at any Mayo Clinic facility or Papworth Hospital.Cambridge University Hospitals, who have AVC will be evaluated via their medical records (retrospective chart review) according to 2010 Task Force Criteria. Family members who are being screened for AVC are also eligible, as are patients with overlapping conditions (phenocopies such as myocarditis, sarcoidosis, inflammatory cardiomyopathies, outflow tract tachycardias and Brugada pattern, and familial dilated cardiomyopathy). Patients seen at other institutions who wish to enroll are encourgaed to apply and may be eligible. For the optional novel genetic variant discovery and biobank phases, patients will be invited to participate and undergo written consent.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: * Patients with a diagnosis of a non-MI SCA who survived * Patients with a non-MI SCD * Patient with a SCA associated with seizures, epilepsy, syncope, drowning and near-drowning, where a cardiomyopathy is suspected * Family member of a patient diagnosed with primary cardiomyopathy (including HCM, idiopathic DCM, AVC) Exclusion Criteria: * Patients with a clear, unambiguous known cause of SCA or SCD such as myocardial infarction or heart failure secondary to ischemic heart disease * Significant coronary artery disease (Epicardial coronary artery stenosis \>50%) which can explain degree of LV dysfunction * Those unwilling to provide written consent or assent

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Conditions

The condition(s) this trial relates to.

Arrhythmias, Cardiac arrhythmogenic right ventricular cardiomyopathy cardiac sarcoidosis cardiomyopathy Cardiovascular Abnormalities cardiovascular disorder congenital anomaly of cardiovascular system Death, Sudden, Cardiac familial dilated cardiomyopathy familial isolated arrhythmogenic ventricular dysplasia, left dominant form heart disorder hypertrophic cardiomyopathy myocarditis sarcoidosis sudden arrhythmia death syndrome sudden cardiac arrest ventricular arrhythmias due to cardiac ryanodine receptor calcium release deficiency syndrome ventricular tachycardia

As listed by the trial registrant

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

Arrhythmogenic right ventricular cardiomyopathy Arrhythmogenic right ventricular dysplasia Arrhythmogenic ventricular cardiomyopathy Cardiac arrhythmia Cardiac sarcoidosis Cardiomyopathies Cardiovascular abnormalities Cardiovascular diseases Familial dilated cardiomyopathy Heart diseases Inflammatory cardiomyopathy Myocarditis Right ventricular outflow tract ventricular tachycardia Sarcoidosis Sudden cardiac arrest Sudden cardiac death Ventricular tachycardia

How to take part

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

  1. The places running it

    2 sites in 2 countries. 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 and phone numbers. 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

  • Royal Papworth Hospital NHS Foundation Trust

    RECRUITING

    Papworth Everard, Cambridge, CB23 3RE, United Kingdom

More trials for these conditions

Other studies related to the condition(s) this trial covers.