Rationale and design of the African Cardiomyopathy and Myocarditis Registry Program: The IMHOTEP study

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; IMHOTEP Investigators

doi:10.1016/j.ijcard.2021.02.026

Rationale and design of the African Cardiomyopathy and Myocarditis Registry Program: The IMHOTEP study

Int J Cardiol. 2021 Jun 15:333:119-126. doi: 10.1016/j.ijcard.2021.02.026. Epub 2021 Feb 16.

Authors

Sarah M Kraus¹, Gasnat Shaboodien¹, Veronica Francis¹, Nakita Laing², Jacqui Cirota¹, Ashley Chin¹, Shahiemah Pandie¹, John Lawrenson³, George A M Comitis⁴, Barend Fourie⁵, Liesl Zühlke⁶, Ambroise Wonkam², Helen Wainwright⁷, Albertino Damasceno⁸, Ana Olga Mocumbi⁹, Lungile Pepeta¹⁰, Khulile Moeketsi¹¹, Baby M Thomas¹¹, Kandathil Thomas¹¹, Makoali Makotoko¹², Stephen Brown¹², Mpiko Ntsekhe¹, Karen Sliwa¹, Motasim Badri¹³, Freedom Gumedze¹⁴, Heather J Cordell¹⁵, Bernard Keavney¹⁶, Vanessa Ferreira¹⁷, Masliza Mahmod¹⁷, Leslie T Cooper¹⁸, Magdi Yacoub¹⁹, Stefan Neubauer¹⁷, Hugh Watkins¹⁷, Bongani M Mayosi¹, Ntobeko A B Ntusi²⁰; IMHOTEP Investigators

Collaborators

IMHOTEP Investigators:
Julius Mwita²¹, Ahmed El-Guindy²², Sir Magdi Yacoub²², Tolno Sandy Kola²³, F Ayub Barasa²⁴, Albertino Damasceno²⁵, Ana Olga Mocumbi²⁶, Okechukwu Ogah²⁷, Motasim Badri²⁸, James Russell²⁹, Ashley Chin³⁰, Sarah Kraus³⁰, Bongani Mayosi³⁰, Mpiko Ntsekhe³⁰, Ntobeko Ntusi³⁰, Karen Sliwa³⁰, Ambroise Wonkam³⁰, Nakita Laing³⁰, Shaheen Pandie³⁰, Blanche Cupido³⁰, George Comitis³¹, John Lawrenson³¹, Rik De Decker³¹, Liesl Zühlke³¹, Paul Brink³², Barend Fourie³², Marshall Heradien³², Lungile Pepeta³³, Nomlindo Makubalo³³, Mahlubandile Nxele³³, Benjamin Longo-Mbenza³⁴, Khulile Moeketsi³⁴, Baby Thomas³⁴, Kandithalal Thomas³⁴, Makoali Makotoko³⁵, Stephen Brown³⁵, Ahmed Suliman³⁶, Sulafa Ali³⁷, Kemilembe Tibazarwa³⁸, Charles Mondo³⁹, Michael Mungoma⁴⁰, Bernard Keavney⁴¹, Heather Cordell⁴², Vanessa Ferreira⁴³, Masliza Mahmod⁴³, Stefan Neubauer⁴³, Hugh Watkins⁴³, Leslie T Cooper⁴⁴, Ellise Tapiwa Gambahaya⁴⁵

Affiliations

¹ The Cardiac Clinic and Hatter Institute of Cardiovascular Research in Africa, Department of Medicine, University of Cape Town (UCT) and Groote Schuur Hospital, Cape Town, South Africa.
² The Cardiac Clinic and Hatter Institute of Cardiovascular Research in Africa, Department of Medicine, University of Cape Town (UCT) and Groote Schuur Hospital, Cape Town, South Africa; Division of Human Genetics, Department of Medicine, UCT, Cape Town, South Africa.
³ Division of Paediatric Cardiology, Department of Paediatrics and Child Health, UCT and Red Cross War Memorial Children's Hospital, Cape Town, South Africa; Division of Paediatric Cardiology, Department of Paediatrics and Child Health, Stellenbosch University and Tygerberg Hospital, Cape Town, South Africa.
⁴ Division of Paediatric Cardiology, Department of Paediatrics and Child Health, UCT and Red Cross War Memorial Children's Hospital, Cape Town, South Africa.
⁵ Division of Paediatric Cardiology, Department of Paediatrics and Child Health, Stellenbosch University and Tygerberg Hospital, Cape Town, South Africa.
⁶ The Cardiac Clinic and Hatter Institute of Cardiovascular Research in Africa, Department of Medicine, University of Cape Town (UCT) and Groote Schuur Hospital, Cape Town, South Africa; Division of Paediatric Cardiology, Department of Paediatrics and Child Health, UCT and Red Cross War Memorial Children's Hospital, Cape Town, South Africa.
⁷ Department of Pathology, National Health Laboratory Service and UCT, Cape Town, South Africa.
⁸ Department of Medicine, Eduardo Mondlane University, Maputo, Mozambique.
⁹ Instituto Nacional de Saúde and Eduardo Mondlane University, Maputo, Mozambique.
¹⁰ Department of Paediatrics, Port Elizabeth Hospital Complex and Nelson Mandela Metropolitan University, Port Elizabeth, South Africa.
¹¹ Division of Cardiology, Nelson Mandela Academic Hospital and Walter Sisulu University, Mthatha, South Africa.
¹² Division of Cardiology, Universitas Hospital and University of the Free State, Bloemfontein, South Africa.
¹³ The Cardiac Clinic and Hatter Institute of Cardiovascular Research in Africa, Department of Medicine, University of Cape Town (UCT) and Groote Schuur Hospital, Cape Town, South Africa; College of Medicine, King Saudi Bin Abdulaziz University for Medical Sciences, Riyadh, Saudi Arabia.
¹⁴ Department of Statistics, UCT, Cape Town, South Africa.
¹⁵ Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, United Kingdom.
¹⁶ Division of Cardiovascular Sciences, University of Manchester, Manchester, United Kingdom.
¹⁷ Radcliffe Department of Medicine, University of Oxford, Oxford, United Kingdom.
¹⁸ Department of Cardiovascular Medicine, Mayo Clinic, Jacksonville, USA.
¹⁹ Heart Science Centre, Harefield, London, UK.
²⁰ The Cardiac Clinic and Hatter Institute of Cardiovascular Research in Africa, Department of Medicine, University of Cape Town (UCT) and Groote Schuur Hospital, Cape Town, South Africa. Electronic address: Ntobeko.Ntusi@uct.ac.za.
²¹ University of Botswana, Gaborone, Botswana.
²² Aswan Heart Centre, Aswan, Egypt.
²³ Hospital De L'amitie Sino-Guineenne, Conakry, Guinea.
²⁴ Moi University, Eldoret, Kenya.
²⁵ Eduardo Mondlane University, Maputo, Mozambique.
²⁶ Instituto Nacional de Saúde, Ministério da Saúde, Maputo, Mozambique.
²⁷ University College Hospital, Ibadan, Nigeria.
²⁸ King Saud Bin Abdalaziz University for Health Sciences, Riyadh, Saudi Arabia.
²⁹ Connaught Hospital, Freetown, Sierra Leone.
³⁰ Groote Schuur Hospital, Cape Town, South Africa.
³¹ Red Cross War Memorial Children's Hospital, Cape Town, South Africa.
³² Tygerberg Hospital, Cape Town, South Africa.
³³ Dora Nginza Hospital, Port Elizabeth, South Africa.
³⁴ Nelson Mandela Academic Hospital, Mthatha, South Africa.
³⁵ University of the Free State, Bloemfontein, South Africa.
³⁶ University of Khartoum, Khartoum, Sudan.
³⁷ Sudan Heart Centre, Khartoum, Sudan.
³⁸ Muhimbili National Hospital, Dar es Salaam, Tanzania.
³⁹ St. Francis Hospital Nsambya, Kampala, Uganda.
⁴⁰ Mulago Hospital, Kampala, Uganda.
⁴¹ University of Manchester, Manchester, United Kingdom.
⁴² University of Newcastle-upon-Tyne, Newcastle, United Kingdom.
⁴³ University of Oxford, Oxford, United Kingdom.
⁴⁴ Mayo Clinic, Jacksonville, United States of America.
⁴⁵ Parirenyatwa Hospital, Harare, Zimbabwe.

PMID: 33607192
DOI: 10.1016/j.ijcard.2021.02.026

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 African Cardiomyopathy and Myocarditis Registry Program (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.

Keywords: Africa; Cardiomyopathy; Cardiovascular outcomes; Genetics; Heart failure; Myocarditis.

MeSH terms

Adult
Africa / epidemiology
Cardiomyopathies* / diagnosis
Cardiomyopathies* / epidemiology
Cardiomyopathies* / genetics
Child
Cohort Studies
Humans
Myocarditis* / diagnosis
Myocarditis* / epidemiology
Myocarditis* / therapy
Prospective Studies
Registries
Retrospective Studies

Abstract

MeSH terms

Grants and funding