Mayo AVC Registry and Biobank

Launched by MAYO CLINIC · Feb 7, 2017

Keywords

ClinConnect Summary

The Mayo AVC Registry and Biobank is a research study aimed at understanding a heart condition called Arrhythmogenic Ventricular Cardiomyopathy (AVC), which can cause serious issues like heart failure and sudden cardiac arrest. The study is working with patients from the U.S. and U.K. who have experienced AVC or sudden cardiac death believed to be linked to AVC. Family members, including those who may not have the condition, are also invited to participate. Researchers will collect various health information and samples to better understand the genetic and biological factors related to AVC.

To be eligible for the study, you should have survived a sudden cardiac arrest not caused by a heart attack, or have experienced a sudden cardiac death. Family members of those diagnosed with primary cardiomyopathy (a type of heart disease) can also join. Participants can expect to undergo tests and provide samples that will help researchers find new genes related to AVC, identify markers that could predict the disease, and understand how the condition progresses over time. This study is important because it aims to improve diagnosis and management of AVC, potentially saving lives and helping families understand their risks.

Gender

ALL

Eligibility 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