Newborn screening for sickle cell disease (SCD) is sparse in sub-Saharan Africa. The leadership of the Aminu Kano Teaching Hospital (AKTH) in Kano, Nigeria, with the support of local religious authorities, established a groundbreaking SCD newborn screening program that has become the standard of care for pregnant women and their newborns. Our program includes (1) prenatal genetic counseling for all pregnant women in the antenatal clinic, (2) newborn screening, (3) postnatal genetic counseling for parents of newborns diagnosed with SCD and SCT, and (4) referral of newborns with SCD for follow-up in the SCD Comprehensive Care Clinic by 3 months of age. From September 2020 to December 2023, the team screened 7530 infants for SCD at the AKTH, identifying 126 (1.7%) infants with SCD and 1546 (20.5%) with SCT. Of these, 93 (73.8%) newborns with SCD received individualized genetic counseling, and 43 (46%) were referred to the SCD Comprehensive Care Clinic before 3 months. Group genetic counseling was provided to the parents of 778 (50.3%) of newborns identified with SCT. The SCD newborn screening at the AKTH is now standard care, indicating the viability of sustaining an SCD newborn screening program that provides pre- and postnatal genetic counseling and comprehensive SCD care within a low-income setting.

Context: Nigeria has the highest burden of sickle cell disease in the world. Premarital counseling (PMC) programs to reduce the burden of hemoglobinopathies have been successfully implemented in Muslim predominant countries with similar religious and cultural practices to northern Nigeria. Religious leaders have a significant role to play in the success of PMC in northern Nigeria. Aims: To assess the knowledge and perception of premarital genetic counseling for sickle cell disease (SCD) among religious leaders in a culturally and religiously sensitive environment. Settings and Design: A cross-sectional (pre and post) study was conducted during the premarital screening workshop for SCD on July 20^th, 2019, at Bayero University Kano, northwest Nigeria. Materials and Methods: Convenient sampling method was used to identify and invite 126 Islamic clerics through the CICID (Centre for Islamic Civilization and Interfaith Dialogue) at Bayero University Kano, to a premarital screening workshop for SCD. Self-administered semi-structured pre-and posttest questionnaires were used to collect data from the participants. Aminu Kano Teaching Hospital Human Health Research and Ethics Committee approved this study. Statistical Analysis Used: Statistical analyses were performed with R version 4.0.2. The data were summarized using descriptive statistics and presented as mean ± standard deviation (SD), median and interquartile range (IQR), and percentages as appropriate. Wilcoxon test for score comparison of pre-and posttest was used with a significance level of 0.05. Results: A total of 97 religious' leaders with a mean age ± SD of 44.7 ± 12.7 completed both pre-and posttests. The male-to-female ratio was 5:1. Participants gave more accurate responses to questions during the posttest period than during the pretest; knowledge of the sign of SCD (Proportion of False Discoveries Rate (pFDR) =0.005), knowledge for the complications of SCD (pFDR = <0.001), knowledge for the best time to test for SCD (pFDR = 0.023) and perception for SCD (pFDR = <0.001). Conclusion: Providing health education to Islamic clerics improved their knowledge about SCD and their willingness to advocate for PMC to intending couples, and as such, we recommend that religious leaders should be involved in PMC counseling programs.

In sub-Saharan Africa, where approximately 75% of newborns with sickle cell disease (SCD) are born, under-five mortality remains high, partly due to the absence of newborn screening (NBS) and delayed linkage to comprehensive care. We conducted a prospective, quasi-experimental study involving two sequential newborn screening cohorts at Aminu Kano Teaching Hospital (AKTH), Kano, Nigeria (December 2022–December 2025), to evaluate the feasibility of integrating newborn screening (NBS) with early comprehensive SCD care and to identify barriers to enrollment before 3 months of age. Following an initial implementation period with suboptimal follow-up, a structured family-centered enrollment and communication strategy was introduced to improve early linkage to comprehensive care. During the pre-intervention period, 277 newborns were enrolled (33 with SCD and 244 without SCD [NSCD]), with early enrollment (≤3 months) occurring in 46.5% overall, higher among SCD than NSCD infants (72.8% vs. 43.0%). Delayed enrollment (>6 months) was more frequent among SCD infants. Following the implementation of family-centered communication strategies, 60 additional newborns were enrolled (16 SCD, 44 NSCD), and early enrollment increased to 91.7%. These findings demonstrate that low-cost, family-centered communication and tracking strategies can substantially improve early linkage to comprehensive SCD care following newborn screening in low-resource settings. Early enrollment is a critical step toward reducing morbidity and mortality among children with SCD in low-resource settings.