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Updated: May 21, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Sickle hemoglobinopathy research in Zimbabwe and Zambia: setting up an international sickle cell disease registry
Patience Kuona1,2, Gwendoline Q Kandawasvika1,2, Catherine Chunda-Liyoka3,4
1Department of Child, Adolescent and Women's Health, Faculty of Medicine and Health Sciences, University of Zimbabwe, Harare, Zimbabwe.
Insights
Sickle cell disease (SCD) affects many African children. This program builds capacity for SCD care, research, and data collection in Zimbabwe and Zambia, improving patient outcomes.
Area of Science:
- Global Health
- Hematology
- Implementation Science
Background:
- Sickle cell disease (SCD) disproportionately impacts African children, causing significant morbidity and mortality.
- Limited access to care and health data hinder effective SCD management in Africa.
- There is a critical need to enhance SCD research infrastructure and standardize care across the continent.
Purpose of the Study:
- To establish a standardized electronic SCD registry in Zimbabwe and Zambia.
- To implement consistent standards of care (SoC) for SCD patients.
- To build research and biobanking capacity for SCD in the region.
Main Methods:
- A multi-pronged approach including infrastructure development and workforce training for SCD clinics, registries, and biobanks.
- Conducting cohort and implementation science research studies.
- Collaborating with the SickleInAfrica consortium, AiBST, and St Jude's Children Research Hospital.
Main Results:
- Established SCD registries in Zimbabwe and Zambia, enrolling 1796 participants (45% of target) by March 2024.
- Actively participating in SickleInAfrica consortium research.
- Training healthcare workers and educating patient communities on SCD standards of care.
Conclusions:
- The program is enhancing SCD research capacity and improving the uptake of standardized care in Zimbabwe and Zambia.
- Collaboration with African researchers, policymakers, and patient communities is crucial for advancing SCD management.
- The initiative aims to improve treatment outcomes for children and adults with SCD in Africa.
Abstract:
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, Mali, Nigeria, Tanzania, Uganda, and South Africa), the African Institute of Biomedical Sciences and Technology (AiBST) and St Jude's Children Research Hospital. We have established the SCD registry in Zimbabwe and Zambia for children and adult patients enrolling 1796 (45%) of the targeted 4,000 participants as of March 2024. 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.
