Sickle hemoglobinopathy research in Zimbabwe and Zambia: Setting up an international Sickle Cell Disease registry

Patience Kuona^1*Gwen Kandawasvika¹Catherine Chunda-Liyoka²Ian Machingura Ruredzo¹Pamela Gorejena-Chidawanyika¹Pauline Musukwa Sambo²Hamakwa Muluti Mantina²Takudzwa Joyleen Mtisi¹Cynthia Phiri²Exavior Chivige¹Lawson Chikara¹Natasha Mupeta Kaweme²Tendai Chris Maboreke¹Jombo Namushi²Uma Athale³Collen Masimirembwa⁴

• ¹University of Zimbabwe, Harare, Zimbabwe
• ²University Teaching Hospital, Lusaka, Zambia
• ³Department of Paediatrics, McMaster Children's Hospital and McMaster University, Hamilton, Ontario, Canada
• ⁴African Institute of Biomedical Science and Technology, Harare, Zimbabwe

Majority of the 500 000 children born with sickle cell disease (SCD) annually are born in Africa. SCD contributes significantly to morbidity and mortality. This is worsened by the reduced access to therapeutic plus preventive care and limited health outcomes data. To address these challenges, 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 a multi-pronged approach 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,