The African Cardiomyopathy and Myocarditis Registry Programme
Lead Research Organisation:
University of Cape Town
Department Name: UNLISTED
Abstract
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.
Technical Summary
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.
Publications
Zühlke LJ
(2017)
Group A Streptococcus, Acute Rheumatic Fever and Rheumatic Heart Disease: Epidemiology and Clinical Considerations.
in Current treatment options in cardiovascular medicine
Zühlke L
(2019)
Cardiovascular medicine and research in sub-Saharan Africa: challenges and opportunities
in Nature Reviews Cardiology
Wijesurendra RS
(2018)
Myocardial Perfusion Is Impaired and Relates to Cardiac Dysfunction in Patients With Atrial Fibrillation Both Before and After Successful Catheter Ablation.
in Journal of the American Heart Association
Sood V
(2017)
Review of cardiovascular magnetic resonance in human immunodeficiency virus-associated cardiovascular disease.
in SA journal of radiology
Sliwa K
(2019)
Battling Cardiovascular Diseases in a Perfect Storm.
in Circulation
Seedat A
(2019)
Healthy Hearts: A student-led heart-health initiative.
in South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde
Nyaga UF
(2018)
Data on the epidemiology of heart failure in Sub-Saharan Africa.
in Data in brief
Noubiap JJ
(2019)
Meta-analysis of Atrial Fibrillation in Patients With Various Cardiomyopathies.
in The American journal of cardiology
Menacho K
(2020)
Myocardial Inflammation and Edema in People Living With Human Immunodeficiency Virus.
in JACC. Cardiovascular imaging
Kraus SM
(2021)
Rationale and design of the African Cardiomyopathy and Myocarditis Registry Program: The IMHOTEP study.
in International journal of cardiology
Herrey AS
(2019)
Cardiovascular magnetic resonance can be undertaken in pregnancy and guide clinical decision-making in this patient population.
in European heart journal. Cardiovascular Imaging
Catalano O
(2018)
Cardiac Magnetic Resonance in Stable Coronary Artery Disease: Added Prognostic Value to Conventional Risk Profiling.
in BioMed research international
Bekker LG
(2018)
Advancing global health and strengthening the HIV response in the era of the Sustainable Development Goals: the International AIDS Society-Lancet Commission.
in Lancet (London, England)
Agbor VN
(2018)
Heart failure in sub-Saharan Africa: A contemporaneous systematic review and meta-analysis.
in International journal of cardiology
Description | UFS Collaborators |
Organisation | University of Free State, Bloemfontein |
Country | South Africa |
Sector | Academic/University |
PI Contribution | Research training of the collaborators. Support of their research work with regular visits by our team for site monitoring, training courses and quality assurance. Invitations to annual investigators' meetings. |
Collaborator Contribution | Recruitment of patients. |
Impact | None as yet. |
Start Year | 2017 |
Description | WITS Collaborators |
Organisation | University of the Witwatersrand |
Country | South Africa |
Sector | Academic/University |
PI Contribution | Research training of the collaborators. |
Collaborator Contribution | Contribution of patients to the collaborative project. |
Impact | None as yet. |
Start Year | 2016 |