SCD is a genetic disease with a global spread but majority of affected individuals live in sub Saharan Africa (SSA). Patients with SCD have chronic illness with periods of relative good health punctuated by catastrophic ill health with complications involving many organ systems. Interventions which can significantly improve the lives of patients with SCD are not being implemented in many high prevalence countries due to inadequate resources, weak health systems and multilevel knowledge and skill gaps. Consequently majority of patients with SCD in SSA cannot access the standard of care for SCD patients obtainable in countries outside Africa. Furthermore, the low level of awareness about SCD preventive strategies have resulted in continued birth of affected individuals in this 100% preventable genetic disease. Ongoing studies withing Sicwill yield crucial information on the incidence of malaria, its seasonality, and its severity among children with sickle cell disease across varied geographic locations in East and West Africa. These data will be used to identify vulnerable subpopulations in which additional preventive measures may be required to reduce the morbidity and mortality of malaria among children living with sickle cell disease.

The malaria observational study will also produce a valuable biospecimen archive which can be used in the future to address pressing questions about malaria parasite transmission, drug resistance, and molecular diversity among children with sickle cell disease. Specifically, the preservation of dried blood spots will enable (1) molecular testing for sub-microscopic malaria infection (i.e., presence of malaria parasites that were undetected by conventional blood smears or rapid diagnostic antigen tests), (2) genotyping for known drug resistance mutations, and (3) sequencing to assess the molecular diversity of parasites that infect children with sickle cell disease.

Together the observational study and biospecimen archive will describe the incidence and nature of malaria infections among children living with sickle cell disease in East and West Africa and help us understand how often these malarial episodes are associated with vaso-occlusive crises, mortality, and other important sickle cell disease-related outcomes. These studies will lay the groundwork for interventional trials to determine which children living with sickle cell disease benefit from malaria chemoprophylaxis, which drugs will be tolerated and effective, and when to deliver them for the greatest impact.

The SickleInAfrica consortium aims to facilitate research in Sickle Cell Disease (SCD) and the subsequent translation of this research into healthcare and health outcomes. SickleInAfrica is made up of three initiatives : Sickle Africa Data Coordinating Center (SADaCC), Sickle Pan-African Research Consortium (SPARCO) and Sickle Cell Pan African Network (SPAN).

SPARCO: Multinational consortium which is coordinated from a hub at the Muhimbili University of Health and Allied Science. SPARCO aims to develop research capacity for SCD through a multidimensional approach which addresses infrastructure, education & training, provision of longitudinal research data and the translation of research into practise.

SADaCC: An administrative, data standardization and coordinating center for Sickle Cell Disease research and infrastructure needs. Its current mandate is to focus on supporting and coordinating data and communications for a partner research network, SPARCO with plans to expand this support to research groups within SPAN in the future.

Vision

Decreased prevalence, mortality and morbidity rates of SCD and improved quality of care and life for SCD patients through use of evidence-based decisions.

Mission

SADaCCs mandate is to support, enhance and coordinate SPARCO communications and data relevant issues, with future plans aimed at being a global SCD data standards and coordinating center.

Conceptual Framework

SADaCC has a core team of staff and consultancies which has a range of expertise which includes Bioinformatics, Software development, Clinical Research, Databasing, Epidemiology, Bioethics and Training. SADaCC has a core team of staff and consultancies which has a range of expertise which includes Bioinformatics, Software development, Clinical Research, Databasing, Epidemiology, Bioethics and Training. Coordination of communications, infrastructure support and training for SPARCO is done collaboratively with the SPARCO Hub through six working groups made up SPARCO, SADaCC, Funders and SPAN members. These include: Data Management, Research, Standards of Care, Sickle Cell Disease Ontology, Skills Development and the Steering Committee.

Stata

In Vivo for qualitatative studies

Hemonc

Sickle In Africa Webinars