Abstract: The Mayo Adult Congenital Heart Disease (MACHD) Research Program is addressing a significant challenge: improving the lives of adults born with congenital heart disease (CHD). While medical advances now mean more people with CHD are living into adulthood than ever before, their life expectancy still lags behind the general population, with most deaths linked to heart-related issues. To bridge the research gap, Mayo Clinic has built two powerful resources: the MACHD Registry, a massive database tracking over 9,000 CHD patients since 2003, and the MACHD Biobank, a prospective project launched in 2019 to collect in-depth heart tests, imaging, and blood biomarkers for advanced analysis. Together, they are uncovering patterns, identifying risks, and paving the way for better treatments.
What makes this initiative unique is its scale, precision, and long-term vision. The Registry gathers detailed medical histories, imaging, and outcomes like heart failure, arrhythmias, and stroke, while the Biobank goes a step further, tracking patients for 10 years and comparing them with healthy controls. With conditions ranging from tetralogy of Fallot to Ebstein anomaly, every case adds to a clearer picture of how CHD changes over time. Backed by major NIH funding, these projects aim to not only improve current care but also lay the foundation for groundbreaking clinical trials. For patients and doctors alike, the MACHD program offers hope that better data today will mean healthier hearts tomorrow.
Read the full Research Article here: The Mayo Adult Congenital Heart Disease (MACHD) Registry and Biobank – ScienceDirect
