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Sickle Cell Cohort Study

Fantsuam was selected to participate in the first SC Cohort study in Nigeria.

A sustainable Pilot Scheme

This project aims to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation.

The project will be implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

The main activities will be to: conduct a hospital and community based survey of children aged less than 16 years, after obtaining informed consent from community leaders and parents for participation; the study will determine the survival pattern of SCD, risk factors for severe disease and complications, and incidence of invasive bacterial disease and prevalence of hepatitis (B and C) and HIV infection in SCD children. Second, the project will establish early diagnosis of SCD through newborn screening.

The expected output will be: the establishment of a repository for DNA for studies on the genetic basis using the data collected, in collaboration with medical researchers in Ghana, the US and the UK, which will allow investigation into risk factors for severe disease and complications in children with SCD.

Organisations involved:

Fantsuam Foundation 

Nigeria London Focus Group on Sickle Cell in Africa (LFGSCA)

UK Medical Association of Nigerian Specialists and General Practitioners (MANSAG)

UK Michigan State University/ CDC - Atlantis