Congenital heart disease is the most common birth defect globally and an important cause of heart failure and death in childhood and early adulthood in Africa.
Now, those born with heart disease (congenital heart disease or CHD) in Africa stand to gain from an R12 million grant from the United Kingdom Medical Research Council (UKMRC) to the University of Cape Town, in partnership with the University of Manchester (UoM). The award will enable a multi-disciplinary research team to develop a comprehensive understanding of the nature and profile of CHD on the continent.
Ultimately, their aim is to reduce premature mortality from cardiovascular disease through improved diagnosis, management and follow-up of children and adults with CHD.
The announcement comes on the cusp of Congenital Heart Disease Awareness Week (7-24 February 2017) and in the first month of Grade R for Thaakirah Mathews, a success story of early diagnosis and treatment. Thaakirah was three months old in 2011 when her mother, Raadhiyah, took her to the Red Cross War Memorial Children’s Hospital for severe diarrhoea. She was eventually diagnosed with a set of complex heart defects known as Double Outlet Right Ventricle (DORV), a condition which affects 1 in 500 000 people.
Two years after her diagnosis, and a series of operations, Thaakirah received the Nikaidoh-bex procedure, a first time surgical procedure of its kind on a child’s heart at the Hospital. With the benefit of early diagnosis and continuous excellent care, an opportunity not available to many on the African continent, Thaakirah has managed to thrive and have a happy childhood post surgery.
Currently, there is little research and analysis of the patterns, causes, and effects of CHD in African populations (what is referred to as the epidemiology of the disease); available evidence so far suggests that the CHD burden is substantially underestimated because of incomplete recording of poor early outcomes, particularly for more severe malformations .
“There is an urgent need for research into congenital heart disease (CHD) to be conducted in Africa,” says Prof Bongani Mayosi Dean of UCT’s Faculty of Health Sciences, and a Co-Principal Investigator of the study. “The resource-related challenges that African countries face in caring for patients with CHD and their families are compounded by the lack of an African specific evidence base.”
An MRC-led Foundation Award, this grant is part of the MRC’s first phase of research funding anticipated from the £1.5bn Global Challenges Research Fund (GCRF). The 41 Foundation Awards led by the MRC, and supported by four UK Research Councils, have been allocated to support ambitious, novel and distinctive research in non-communicable diseases and infections, with the aim of improving the health and prosperity of low and middle-income countries through harnessing the UK’s research expertise.
“This grant will fund a north-south partnership in Congenital Heart Disease (CHD), which will generate new knowledge on the epidemiology and outcome of congenital heart disease (CHD) in South Africa,” says Co-Principal Investigator Prof Liesl Zuhlke, a paediatric cardiologist who recently established the Children’s Heart Disease Research Unit at Red Cross War Memorial Children’s Hospital.
To date, no genetic studies of CHD have been conducted in sub-Saharan African populations. To improve the outcome for CHD patients in Africa, it is necessary to provide further underpinning research informing selection of methods of treatment.
“We will address this in a multidisciplinary fashion involving clinicians, imaging scientists, and biophysicists,” says co-Principal Investigator Bernard Keavney, of Manchester University. “The specific scientific deliverables of the project will be focused on the genetic predisposition to CHD, leveraging the existing expertise of the UK partner team in CHD genetics, and of the UCT team in the genetics of rheumatic fever and cardiomyopathy; and building capacity for next-generation sequencing data generation and interpretation in Africa,” he explains.
Significantly, the key product of the project will be to build capacity and establish a centre of excellence for CHD research with a new cadre of postgraduate students engaged in genomics, imaging, and biomechanical modelling.
“The opportunity to highlight the need for further comprehensive investigation into Congenital heart disease and to develop, support and consolidate research around children’s heart disease in Africa is hugely exciting – in addition to the chance to develop a new cadre of people experienced in this arena,” says Prof Zuhlke.
The project will also develop a collaborative network between researchers in Southern Africa and the United Kingdom, and establish a platform to strengthen CHD research (clinical, imaging and genomics) on the African continent.