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June 19, 2026International Journal of Neonatal Screening0 citationsOpen Access

Implementation of a Prospective Birth Cohort for Newborn Screening and Early Linkage to Comprehensive Sickle Cell Disease Care in a Low-Resource Setting

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UIUmma A. IbrahimAMAisha B. MusaOAOiza O. Aliu-Isah

Key Points

  • To assess the feasibility of newborn screening integration with early comprehensive care for sickle cell disease in sub-Saharan Africa.
  • Conducted a quasi-experimental study at Aminu Kano Teaching Hospital, Nigeria.
  • Implemented family-centered enrollment and communication strategies to improve early linkage.
  • Tracked enrollment rates before and after strategies were introduced.
  • Initial enrollment included 277 newborns, with early enrollment at 46.5%, higher for SCD (72.8%) than NSCD (43.0%).
  • Post-implementation, 60 additional newborns (16 SCD, 44 NSCD) enrolled, raising early enrollment to 91.7%.
  • Demonstrated that family-centered strategies significantly improve early linkage to care.

Abstract

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.

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Cite This Study

Ibrahim et al. (2026) studied this question.

synapsesocial.com/papers/6a34dd4965a5b0777af2d0aahttps://doi.org/10.3390/ijns12020042
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