SPARCO (Sickle Pan-African Research Consortium) funded by National Institute of Health (NIH) – Nov-21 to Oct-26
Sickle Cell Disease (SCD) poses a significant health challenge in Sub-Saharan Africa (SSA), contributing to considerable illness and 16% of under-5 mortality. Uganda sees 25,000 new SCD cases annually, accounting for nearly 2% of births and 18% of child mortality.
While developed countries have successfully implemented evidence-based strategies to improve SCD outcomes, such measures are not widely applied in SSA. Limited accurate data on SCD prevalence and distribution hinders effective intervention design. Although Uganda’s national surveillance has documented SCD prevalence, there is a lack of longitudinal data and a system for data collection and aggregation
The SPARCO network’s data management guidelines will facilitate the establishment of a local SCD registry in Uganda. Comprehensive clinical care, encompassing follow-up, education, and prevention, is essential but not yet standardized in Uganda. Persistent high morbidity rates underscore the urgent need for improved care standards.