The Impact of SickleinAfrica: Julie Makani

The Impact of SickleinAfrica: Collaboration for Sickle Cell Disease Health, Education, Advocacy and Research in Africa

Sickle Pan-African Consortium (SPARCO) The Sickle Pan-African Consortium (SPARCO) consists of a hub in East Africa (Tanzania) and collaborative consortium sites in West Africa (Ghana, Nigeria) which will expand to form the Sickle Pan-African Network (SPAN) involving 22 sites in 17 countries.

Background of the project: Over the past 10 years, there have been concerted efforts in Africa to address the burden of SCD. These efforts while commendable have been limited by 4 factors; 1) the absence of a multi-site, well described cohort of SCD 2) failure to deploy consistent standards of care 3) human resource capacity that is limited in number and skills and 4) few programs to explore pertinent research questions to understand SCD in Africa and guide locally-appropriate interventions. All this has been compounded by the absence of collaboration within Africa to address these challenges.

Specific aims: SPARCO aims to 1) develop a sickle cell disease (SCD) database 2) establish standards of care, 3) strengthen skills in health and research and 4) plan research.
Significance and relevance to public health: The countries that bear the greatest public health burden (prevalence, high mortality and morbidity, absence of effective interventions) of SCD are in Africa. The genetic diversity in Africa will allow scientific research that will increase our understanding of how a monogenic disease can have such heterogeneity. Unique features and innovation: SPARCO brings together clinicians, academicians and scientists from 3 sites with existing SCD programs, with ongoing activities in health, education and/or research, embedded in the local infrastructure.

Methodology: SPARCO has established a SCD database that will form a SCD registry (n= 13,000) which will be interphased with the institutional health information management system. Guidelines for Standards of care that are locally-appropriate are being developed based on resources available. Working with existing programs, SPARCO is increasing the quantity and quality of skills to ensure that there is a critical mass of healthcare professionals, educators and scientist working in SCD. SPARCO is building on existing research activities to conduct cohort studies (n=1,500) [describing spectrum of disease (hematology and infectious disease outcomes) and identify factors associated with/modifying disease. Furthermore, SPARCO is developing implementation studies, focusing on newborn screening (n=30,000), infection prevention (against pneumococcal infection n=600) and increasing the use of Hydroxyurea in a systematic manner (n=1,500). Expected results: The goal is to reduce the public health burden (mortality and morbidity) of SCD in Africa whilst establishing the capacity for research that will contribute to scientific knowledge to find a cure for SCD. The overall aim is to illustrate that with effective partnerships, significant advances in health and biomedical science can be achieved.