Biobank and Registry for Adults 16 Years and Older with Congenital Heart Disease and Related Heart Conditions

What this Trial Is About

Researchers are collecting and managing a repository of tissue samples and detailed health information from adults aged 16 and older with congenital heart disease and related conditions. The study aims to support future research on the biological causes of these diseases, how the body compensates or worsens over time, links between clinical features and biomarkers, and factors that predict health outcomes. Control groups include adults without these conditions to provide comparison data. The study involves enrolling adults attending clinical visits at the Heart Institute and potentially other cardiology departments in the future. Data collection includes biospecimens and extensive health information gathered at baseline and repeatedly over time during outpatient visits and procedures. This ongoing approach helps capture changes in health status and patient experiences. Participants will provide samples and information through surveys about symptoms and lifestyle, along with patient-reported outcome measures. The main goal is to establish and maintain a biospecimen repository successfully. Researchers will track the availability of samples over time and collect data longitudinally. The study allows for long-term observation to better understand disease progression and outcomes in these conditions.

Heart Institute Biobank & Registry for Adult Congenital Heart Disease and Related Disorders