SickleInAfrica

Abstract

Over the past 20 years, organised efforts in Africa have described and addressed the burden of sickle cell disease, with commendable achievements. However, there have been four limiting factors. First, there have been few multisite, well described cohort studies of sickle cell disease in Africa. Second, there is no evidence yet that consistent standards of care are applied across Africa. Third, there are insufficient human resources, both in numbers and skills. Finally, there are few programmes exploring pertinent research questions related to sickle cell disease in Africa to guide locally appropriate interventions. This situation is compounded by inadequate collaboration within Africa that would otherwise allow sharing of experience and reduce duplication of efforts. SickleInAfrica is a consortium set up to address these factors by shaping health policy in countries that bear the greatest burden of sickle cell disease worldwide. The countries selected are characterised by high sickle cell disease prevalence, mortality and morbidity, and suboptimal use of interventions that could reduce mortality in children younger than 5 years. The time for this initiative is optimal, as there has been considerable progress in developing genomic research in Africa, specifically in sickle cell disease. These advances will not only improve our understanding of genetic diversity in Africa, but will also clarify how a monogenic disease can have such heterogeneous manifestations. It is imperative that Africa contributes to genomics research to improve health and introduce curative treatments of sickle cell disease.