A health advocacy group, Salfar Sickle Aid Initiative, has called on the Federal Government to establish a national register for persons living with sickle cell disease, warning that the absence of reliable data continues to hinder effective response to the condition in Nigeria.
The group said Nigeria, which bears the highest burden of sickle cell disease globally, still relies on fragmented data systems, making it difficult to accurately track patients, plan interventions, and allocate resources.
In a statement on Tuesday, the organisation noted that existing data on sickle cell disease is scattered across hospitals, research institutions, and programme records, with no unified system to provide a comprehensive national picture.
It stressed that the lack of a central register leaves many patients “statistically invisible,” a situation it said often translates into gaps in policy, funding, and healthcare delivery.
The group explained that a national patient register would enable government and stakeholders to move from estimates to precise, real-time data, improving decision-making and targeting of interventions.
It also highlighted the socio-economic dimension of the disease, noting that many affected individuals come from low-income households with limited access to consistent care and support services.
According to the organisation, a well-structured register should go beyond medical records to include socio-economic data such as income level, access to health insurance, education, and geographic vulnerability.
It said such data would help government design targeted social protection programmes, subsidise treatment, and prioritise vulnerable patients within the national health insurance scheme.
The group added that a national register would improve continuity of care, allowing healthcare providers to track patient histories, monitor treatment outcomes, and intervene early in managing complications.
It noted that this would reduce mortality rates, improve quality of life, and lower long-term healthcare costs associated with the disease.
The initiative further stated that Nigeria stands to benefit strategically from establishing a national database, as reliable data would attract global research collaborations, funding opportunities, and innovation in treatment.
It, however, said that while some organisations have begun building structured data systems, their impact remains limited without full government adoption and integration into a national framework.
The group urged the Federal Government to demonstrate political will and coordinate existing efforts into a unified system capable of addressing the growing burden of sickle cell disease.
It added that a national register would mark a shift from fragmented responses to a more coordinated, data-driven approach to managing chronic diseases in the country.
