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Sickle Cell Disease in Africa: SickleInAfrica Registry in Ghana, Nigeria and Tanzania. 2025
Jack Morrice, and
Wilson Mupfururirwa, and
Reuben I Chianumba, and
Evans Xorse Amuzu, and
Daniel Kandonga, and
Victoria Nembaware, and
Mario Jonas, and
Jade Hotchkiss, and
Upendo Masamu, and
Arthemon Nguweneza, and
Bruno P Mmbando, and
Irene Minja, and
Agnes Jonathan, and
Nicola Mulder, and
Emmanuel Balandya, and
Alex Osei-Akoto, and
Vivian Paintsil, and
Julie Makani, and
Obiageli Nnodu, and
, and
Raphael Z Sangeda, and
Andre Pascal Kengne, and
Gaston Kuzamunu, and
Ambroise Wonkam
Division of Human Genetics Department of Pathology University of Cape Town, Health Sciences Campus Observatory South Africa.
Sickle cell disease (SCD) is most prevalent in Sub-Saharan Africa (SSA), where incomplete patient profiles and limited management strategies hinder research and healthcare standards. We describe the first large-scale and multinational assessment of 13,403 SCD patients enrolled from 2017-2021 across 31 facilities in Ghana, Nigeria, and Tanzania into the SickleInAfrica consortium registry. We used hierarchical regression models to estimate and analyze the demographics, adoption levels of SCD diagnosis and therapies. The average age at diagnosis was 3 months, 19 months and 3 years in Ghana, Nigeria and Tanzania respectively, reflecting differences in country-specific newborn screening programs and policies. Hydroxyurea (HU) use was highest in Ghana (21%), followed by Nigeria (12%) and Tanzania (6%), with significant variability across facilities. Sex differences in SCD management were observed, with males more likely to receive HU and blood transfusions. At the consortium level, HU initiation correlated with enrolment age rather than age at diagnosis, highlighting the need for earlier intervention. Our findings highlight the potential of the SickleInAfrica registry toward enhancing understanding of regional disparities in SCD care and potential gender inequalities, emphasizing the need for enabling policies toward strengthened SCD research and improved quality of life and care of patients in Africa.
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