The African Cardiomyopathy and Myocarditis Registry Programme

The proposed African Cardiomyopathy and Myocarditis Registry Programme provides an opportunity to study a range of different types of cardiomyopathy. Genetic cardiomyopathies warrant close study because they are often present in younger individuals and are a major cause of medical disability and death. Correctly identifying the disease-causing mutation (mistake in the DNA) in an affected individual potentially affords a gold standard diagnostic marker for the presence or absence of the disease among relatives. Family screening provides a unique opportunity to offer early diagnosis, risk stratification and intervention preventatively or early on in the disease process. In many parts of the world, genetic testing in inherited heart disease has become standard of care. In Africa, the cost-effectiveness of genetic testing in the diagnosis and management of patients with inherited cardiomyopathies has not yet been determined. The complexity of cardiomyopathy and genetic testing increasingly supports a model of clinical care involving a specialist unit with geneticists and genetic counselors,9 which is not readily available on the African continent. The ACMR will provide a foundation on which appropriate national cardiogenetics services can be developed.

The proposed African Cardiomyopathy and Myocarditis Registry Programme (IMHOTEP) provides an opportunity to study a range of different types of cardiomyopathy. Genetic cardiomyopathies warrant close study because they are often present in younger individuals and are a major cause of medical disability and death. Correctly identifying the disease-causing mutation (mistake in the DNA) in an affected individual potentially affords a gold standard diagnostic marker for the presence or absence of the disease among relatives. Family screening provides a unique opportunity to offer early diagnosis, risk stratification and intervention preventatively or early on in the disease process. In many parts of the world, genetic testing in inherited heart disease has become standard of care. In Africa, the cost-effectiveness of genetic testing in the diagnosis and management of patients with inherited cardiomyopathies has not yet been determined. The complexity of cardiomyopathy and genetic testing increasingly supports a model of clinical care involving a specialist unit with geneticists and genetic counselors, which is not readily available on the African continent. IMHOTEP will provide a foundation on which appropriate national cardiogenetics services can be developed.