Introducing newborn screening (NBS) services for sickle cell disease (SCD) in Africa has been proven to be one of the most costeffective approach to reducing morbidity and mortality associated with this condition. In view of this evidence, efforts have been made by countries in Africa where SCD prevalence is high to pilot NBS programmes and to strengthen comprehensive care services for SCD. While it is important to reap the benefits of NBS for SCD in Africa in terms of overall quantitative measures, it is also important to understand how certain social and cultural conditions may disproportionately influence the outcomes of screening for some groups. The aim of this study was to analyse the role of gender norms before and after NBS for SCD in Tanzania, and to assess how they influence the quality of care of diagnosed children. Using qualitative methods, we did in-depth interviews with families of children with SCD identified through the NBS services and focus group sessions with nurses working in neonatal and postnatal sections of regional referral hospitals in Dar es Salaam. By analysing the experiences of both the families and nurses, we were able to provide evidence on, firstly, the gendered relations that undergird childcare and, secondly, how those relations influence the quality of care the child may potentially receive. The results emphasize the importance of studying the social implications of SCD in Africa, especially with regard to improving the quality of care for patients with SCD in the region. We propose simple interventions, including gender-conscious health education and genetic counselling, which can help to improve the community understanding of genetic diseases while also reducing gender-related inequalities related to SCD care in Africa.

Sickle cell disease (SCD) is one of the most common monogenic diseases in humans with multiple phenotypic expressions that can manifest as both acute and chronic complications. Although described more than a century ago, challenges in comprehensive disease management and collaborative research on this disease are compounded by the complex molecular and clinical phenotypes of SCD, environmental and psychosocial factors, limited therapeutic options and ambiguous terminology. This ambiguous terminology has hampered the integration and interoperability of existing SCD knowledge, and SCD research translation. The SCD Ontology (SCDO), which is a community-driven integrative and universal knowledge representation system for SCD, overcomes this issue by providing a controlled vocabulary developed by a group of experts in both SCD and ontology design. SCDO is the first and most comprehensive standardized human- and machine-readable resource that unambiguously represents terminology and concepts about SCD for researchers, patients and clinicians. It is built around the central concept ‘hemoglobinopathy’, allowing inclusion of non-SCD haemoglobinopathies, such as thalassaemias, which may interfere with or influence SCD phenotypic manifestations. This collaboratively developed ontology constitutes a comprehensive knowledge management system and standardized terminology of various SCD-related factors. The SCDO will promote interoperability of different research datasets, facilitate seamless data sharing and collaborations, including meta-analyses within the SCD community, and support the development and curation of data-basing and clinical informatics in SCD.

BACKGROUND: Neonatal hypothermia is a major cause of mortality. This study determined the prevalence and factors associated with neonatal hypothermia in two regional referral hospitals in Dar es Salaam, Tanzania. METHODS: Cross-sectional study was carried out between March and May 2021 at the Mwananyamala and Temeke Regional Referral Hospitals. Simple random and stratified sampling procedures were used to select study sites and proportionate population samples from each hospital respectively. Body temperature was measured within 90 minutes post birth; knowledge of the WHO guidelines on thermal protection of new-borns was collected from the mothers and health care providers using questionnaires. Logistic regression was used to assess associations between variables. SPSS version 25 was used to analyse the data and p < 0.05 was considered significant. RESULTS: Total of 296 mother-new-born pairs and 41 health care providers were enrolled in the study. 26 mothers did not consent for the study. 25.6% of the 270 studied neonates were hypothermic. Lack of skin-to-skin contact with the mother; early neonatal weighing and bathing increased likelihood of neonatal hypothermia. Knowledge of neonatal thermal protection among mothers and care-providers was inadequate. CONCLUSIONS: The prevalence of neonatal hypothermia among neonates in the referral hospitals is high. The findings suggest knowledge gaps of the WHO recommended guidelines on neonatal hypothermia are associated with neonatal hypothermia. Efforts to increase awareness of the WHO recommended thermal protection guidelines are needed.