Registry and biobank for arrhythmogenic ventricular cardiomyopathy
Official title: Identification of Novel Genetic Variants and Biomarkers of Disease Progression in Arrhythmogenic Cardiomyopathy
Run by Mayo Clinic · NCT03049254 · Data updated 2026-11-12
This study is trying to gather information and samples from people with arrhythmogenic ventricular cardiomyopathy and their families to better understand the genetic causes of the condition and improve early diagnosis for those at risk.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 1000 (estimated) |
| Sponsor | Mayo Clinic Academic / other |
| Locations | 2 sites (Rochester, Minnesota and 1 other locations) |
| Status | Recruiting |
| Started | February 9, 2018 |
| Main results expected | March 2027 |
| Study ends | March 2027 |
| Registry record updated | April 27, 2026 |
| Trial ID | NCT03049254 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include patients with a history of arrhythmogenic ventricular cardiomyopathy or sudden cardiac death, as well as their blood relatives.
✕Probably not a fit
Patients with a clear known cause of sudden cardiac arrest or significant coronary artery disease will 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 study aims to create a registry and biobank for patients with arrhythmogenic ventricular cardiomyopathy (AVC) and their family members. It will collect a wide range of data, including symptoms, ECGs, imaging studies, and genetic samples, to better understand the genetic underpinnings of AVC and its association with sudden cardiac arrest. The study involves collaboration between the Mayo Clinic in the US and Papworth Hospital in the UK, focusing on enrolling individuals with a history of AVC or sudden cardiac death. The goal is to identify new genetic mutations and improve early diagnosis and screening for at-risk family members.
Why it matters
Potential benefit: If successful, this study could lead to earlier diagnosis and better management of AVC, potentially saving lives of affected individuals and their relatives.
How similar studies have gone: Other studies have shown success in identifying genetic causes of similar conditions, indicating that this approach has potential for meaningful advancements.
Who can join: the full rules
Show full inclusion / exclusion criteria
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
Where it's running
-
Mayo Clinic
Rochester, Minnesota, United States Recruiting -
Royal Papworth Hospital NHS Foundation Trust
Papworth Everard, Cambridge, United Kingdom Recruiting
Study contacts
- Principal investigator: Virend Somers, PhD, MD — Mayo Clinic
- Study coordinator: Nicholas Wozniak
- Email: wozniak.nicholas@mayo.edu
- Phone: +1 507 2558794
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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.