<div> <span>A Registry Worth Building: Designing a National Sickle Cell Register that Earns its Cost</span> </div>

Background. Nigeria's national guideline already requires a sickle cell disease registry integrated into the National Health Management Information System (Federal Ministry of Health, 2022). A registry also exists: the SickleInAfrica consortium enrolled 13,403 patients across Ghana, Nigeria and Tanzania between 2017 and 2021, including 6,572 patients in Nigeria across 22 facilities (Morrice et al., 2025). The policy question is therefore not whether Nigeria can build a registry, but what a national registry should be designed to achieve.

The central finding. SickleInAfrica provides a critical lesson for future registry design. The consortium defined 1,514 standardised data elements, but only 92 were collected across all facilities; after harmonisation, just 14 of those 92 were available and complete across every facility (Morrice et al., 2025). At one site, blood group data were up to 99.7% missing. A registry specified at 1,514 variables ultimately produced 14 consistently usable ones.

Argument. This paper argues that over-specification is a major failure mode of disease registries in low-resource health systems, driven by conflation of three distinct purposes: service delivery, research and accountability. These purposes require different datasets. A research-oriented registry may demand information that clinical staff cannot routinely provide, whereas a service-oriented registry is more likely to be completed because the data collected directly support patient care.

Contribution. The paper proposes a minimum viable national registry centred on service delivery rather than a research question: a defined dataset small enough to complete at every clinical contact; a rule that no field can be added without removing another; ownership within the routine health information system rather than a time-limited project; consent and governance aligned with the Nigeria Data Protection Act (Federal Republic of Nigeria, 2023); and a completeness-first quality standard informed by the English registry's coverage and consent performance (National Haemoglobinopathy Registry, 2023).