1. Rationale and design of the African Cardiomyopathy and Myocarditis Registry Program: The IMHOTEP study
- Author
-
Sarah M. Kraus, Gasnat Shaboodien, Veronica Francis, Nakita Laing, Jacqui Cirota, Ashley Chin, Shahiemah Pandie, John Lawrenson, George A.M. Comitis, Barend Fourie, Liesl Zühlke, Ambroise Wonkam, Helen Wainwright, Albertino Damasceno, Ana Olga Mocumbi, Lungile Pepeta, Khulile Moeketsi, Baby M. Thomas, Kandathil Thomas, Makoali Makotoko, Stephen Brown, Mpiko Ntsekhe, Karen Sliwa, Motasim Badri, Freedom Gumedze, Heather J. Cordell, Bernard Keavney, Vanessa Ferreira, Masliza Mahmod, Leslie T. Cooper, Magdi Yacoub, Stefan Neubauer, Hugh Watkins, Bongani M. Mayosi, Ntobeko A.B. Ntusi, Julius Mwita, Ahmed El-Guindy, Sir Magdi Yacoub, Tolno Sandy Kola, F. Ayub Barasa, Okechukwu Ogah, James Russell, Sarah Kraus, Bongani Mayosi, Ntobeko Ntusi, Shaheen Pandie, Blanche Cupido, George Comitis, Rik De Decker, Paul Brink, Marshall Heradien, Nomlindo Makubalo, Mahlubandile Nxele, Benjamin Longo-Mbenza, Baby Thomas, Kandithalal Thomas, Ahmed Suliman, Sulafa Ali, Kemilembe Tibazarwa, Charles Mondo, Michael Mungoma, Heather Cordell, and Ellise Tapiwa Gambahaya
- Subjects
Adult ,Pediatrics ,medicine.medical_specialty ,Myocarditis ,Heart disease ,Cardiomyopathy ,Disease ,030204 cardiovascular system & hematology ,Cohort Studies ,03 medical and health sciences ,0302 clinical medicine ,medicine ,Humans ,030212 general & internal medicine ,Prospective Studies ,Registries ,Prospective cohort study ,Child ,Retrospective Studies ,business.industry ,medicine.disease ,Cohort ,Africa ,Etiology ,Cardiology and Cardiovascular Medicine ,business ,Cardiomyopathies ,Cohort study - Abstract
Background Heart failure (HF), the dominant form of cardiovascular disease in Africans, is mainly due to hypertension, rheumatic heart disease and cardiomyopathy. Cardiomyopathies pose a great challenge because of poor prognosis and high prevalence in low- and middle-income countries (LMICs). Little is known about the etiology and outcome of cardiomyopathy in Africa. Specifically, the role of myocarditis and the genetic causes of cardiomyopathy are largely unidentified in Africans. Method The Afr i can Cardio m yopat h y and My o cardi t is R e gistry P rogram (the IMHOTEP study) is a pan-African multi-centre, hospital-based cohort study, designed with the primary aim of describing the clinical characteristics, genetic causes, prevalence, management and outcome of cardiomyopathy and myocarditis in children and adults. The secondary aim is to identify barriers to the implementation of evidence-based care and provide a platform for trials and other intervention studies to reduce morbidity and mortality in cardiomyopathy. The registry consists of a prospective cohort of newly diagnosed (i.e., incident) cases and a retrospective (i.e., prevalent) cohort of existing cases from participating centres. Patients with cardiomyopathy and myocarditis will be subjected to a standardized 3-stage diagnostic process. To date, 750 patients have been recruited into the multi-centre pilot phase of the study. Conclusion The IMHOTEP study will provide comprehensive and novel data on clinical features, genetic causes, prevalence and outcome of African children and adults with all forms of cardiomyopathy and myocarditis in Africa. Based on these findings, appropriate strategies for management and prevention of the cardiomyopathies in LMICs are likely to emerge.
- Published
- 2020