Capacity building in African research :creation of a multicentre Congenital Heart Disease registry and biorepository in Cape Town (in Partnership with University of Cape Town)

Narrative

Established to address the lack of basic information about Congenital Heart Disease (CHD) on the African continent, and to leverage genomic variation in the African population to discover new CHD genes of importance to patients and families globally.

In our PROTEA (Partnerships for Children with Heart Disease in Africa) project, conducted in partnership with the University of Cape Town, South Africa, we established a CHD Registry and Biorepository at Red Cross War Memorial Children’s Hospital, Cape Town. We built and deployed a clinical Research Electronic Data Capture database (REDCAP) database, to improve patient data integration and the planning of care alongside the establishment of the research registry. The database is now being rolled out to improve the quality of clinical record-keeping and facilitate research in three other African countries, operative in Namibia as of Q1 2021.

We conducted genetic studies in our CHD volunteer families. This enabled the training of students and young scientists in South Africa in state of the art genomic medicine and bioinformatics, delivering high-value skills to the African research partner. In addition, new knowledge about the genetics of CHD was delivered, to enable genetic diagnosis in volunteer families.

Impact date	1 Jan 2017
Category of impact	Attitudes and behaviours, Awareness and understanding, Society and culture
Impact level	Benefit