Sickle cell disease (SCD) is one of the most common inherited blood disorders in the world. Globally, approximately 300,000 infants are born with SCD, and by 2050, this number is estimated to rise to 450,000 per year. Across Africa, Uganda has the 5th highest SCD disease burden. With an estimated 20,000 children born per year with SCD, the need for accessible quality healthcare, education, and diagnostic testing resources is essential to mitigate this burden and improve the quality of care. In early 2021, the Uganda Ministry of Health announced a new focus on reducing SCD burden in Uganda.  Joel Kibonwabake, the Co-PI on this study, was the first to identify a significant unmet need for sickle cell services in Kalangala District, and in 2015, he opened the first Sickle Cell Clinic in the district. Therefore, the time is right for increased attention to sickle cell in Uganda, and specifically, Kalangala District.

Early screening/diagnosis plus simple medical interventions can significantly reduce SCD symptoms and risks. This pilot study seeks to assess all factors that may influence the uptake  of universal newborn screening of sickle cell disease in Kalangala and the feasibility of adopting this intervention in a low-resource area. The main objective of the study is to understand the facilitators and barriers to newborn screening of sickle cell disease in Kalangala by exploring parental and health workers’ perspectives through in-depth interviews and surveys. Through surveys and in-depth interviews, we will investigate the infrastructural capacity and readiness of Kalangala Health Center IV and other government facilities to implement universal newborn screening for sickle cell disease.