Why the study?
Despite improvements in long-term survival for patients born with congenital heart disease, adults with CHD still have significantly lower life expectancy compared to the general population.
The MACHD Registry and Biobank establish a comprehensive retrospective and prospective database to study adults with congenital heart disease.
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Provides a new resource for studying adults with congenital heart disease; leaves open clinical translation pending outcome data.
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.
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Egbe et al. (2025) studied this question.
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