The Mayo Adult Congenital Heart Disease (MACHD) Registry and Biobank

The long-term survival of patients born with congenital heart disease (CHD) has increased significantly over time, and as a result, there are more adults living with CHD than children. In spite of the improvement in the long-term survival of CHD patients, adults with CHD still have significantly lower life expectancy compared to the general population. The Mayo Adult Congenital Heart Disease (MACHD) Research Program consists of 2 key databases: 1) the MACHD Registry; and 2) the MACHD Biobank. The MACHD Registry is a retrospective registry of all adults with CHD that received care at the Mayo Clinic Enterprise from January 2003 onward. Offline image analysis is performed in the MACHD Imaging Core Laboratory. The MACHD Biobank project is a prospective database that became operational on January 2019. Patients enrolled in the MACHD Biobank undergo comprehensive cardiovascular testing. The manuscript describes the rationale, design, and baseline characteristics of patients in the study.