The Sickle Pan-African Consortium (SPARCO) consists of a hub in East Africa (Tanzania) and collaborative consortium sites in West Africa (Ghana, Nigeria) and central Africa (Cameroon, Democratic Republic of Congo) which will expand to form the sickle Pan-African Network involving 20 sites in 15 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. The significance of the proposed research 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. Furthermore, the diversity in Africa will allow scientific research that will increase our understanding of how a monogenic disease can have such heterogeneity. The unique features and innovation of the project: SPARCO brings together clinicians, academicians and scientists from 5 sites with existing SCD programs, with ongoing activities in health, education and/or research, embedded in the local infrastructure. The methodology to be used: SPARCO will establish a SCD database that will form a SCD registry (n= 20,000) which will be embedded/interphase with the institutional health information management system. Standards of care will be determined that are locally-appropriate, based on resources available. Working with existing programs, SPARCO will increase the quantity and quality of skills to ensure that there is a critical mass of healthcare professionals, educators and scientist working in SCD. Finally, we will build on existing research activities to conduct cohort studies (n=2,500) [describing spectrum of disease (hematology, neurology, cardiovascular outcomes); describe spectrum of hemolysis and identify factors associated with/modifying disease. In addition, we will conduct implementation studies, focusing on newborn screening (n=50,000), infection prevention (against malaria and pneumococcal infection n=1,000) and increase the use of Hydroxyurea in a systematic manner (n-2,500). Expected results and description of how your results will affect other research areas: 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.
The Sickle Pan-African Consortium (SPARCO) consists of a hub in East Africa (Tanzania) and collaborative consortium sites in West Africa (Ghana, Nigeria) and central Africa (Cameroon, Democratic Republic of Congo) which will expand to form the sickle Pan-African Network involving 20 sites in 15 countries. It aims to develop a sickle cell disease (SCD) database (SCD registry n= 20,000), establish standards of care, strengthen skills and plan research; with cohort studies [describing spectrum of disease (hematology, neurology, cardiovascular outcomes); hemolysis and identifying factors associated/modifying disease] and implementation studies (newborn screening, infection prevention and Hydroxyurea). 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.
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