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.

The authors have declared no competing interest.

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethical approval was obtained from the Joint Research Ethics Committee JREC/202/21 and Medical Research Council of Zimbabwe MRCZ/A/2747 in Zimbabwe. Ethical approval was obtained from the Excellence Research Ethics & Science Converge ERES 2021-May-092 and from the National Health Research Authority NHRA00027/26/09/2023 in Zambia.

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