Sickle hemoglobinopathy research in Zimbabwe and Zambia (SHAZ): Protocol for setting up an international Sickle Cell Disease registry

Abstract

Of the 500 000 children born with sickle cell disease annually, most cases occur in Africa, contributing to significant morbidity and mortality associated with limited sickle cell disease (SCD) health outcomes data and reduced access to therapeutic plus preventive care. We aim to develop and manage a standardized electronic SCD registry, establish consistent standards of care (SoC) for patients, improve the SCD research and biobanking capacity in Zimbabwe and Zambia. This five-year program employs mixed methods that include infrastructure and skilled manpower capacity building of SCD clinics, registry, biobanking, cohort and implementation science research studies to improve SCD treatment outcomes. We are collaborating with the SickleInAfrica consortium (Ghana, Mali, Nigeria, Tanzania, Uganda, and South Africa), the African Institute of Biomedical Sciences and Technology (AiBST) and St Jude’s Children Research Hospital. We established the SCD registry in Zimbabwe and Zambia for children and adult patients enrolling 1796/4000 (45%) participants to date. We are participating in SickleInAfrica consortium research activities, training health workers and educating SCD patient communities on SoC. This collaboration with African researchers, policymakers, health workers, and SCD patient communities will improve uptake of SCD SoC and increase our research capacity.