This is the inaugural issue of Sickle In Africa, a bi-annual Newsletter for the Sickle Africa Data Coordinating Center (SADaCC), Sickle Pan African Research Consortium (SPARCO) and the Sickle Pan-African Network (SPAN). Sickle In Africa aims to keep members and stakeholders aware of progress, achievements and upcoming events within SADaCC, SPARCO, SPAN and other partners such as SickleGenAfrica. A brief background to SADaCC and SPARCO is given in the next paragraph.
Sickle Cell Disease (SCD) is most common in people from Mediterranean, Middle Eastern, Caribbean, North, Central, and South American countries. The most common types of SCD (SS, HbSC, HbS β thalassaemia) with approximately 400,000 annual births globally1. More than 300,000 of these births were estimated (2010) to have SCD-SS, with 79.2% them born in sub-Saharan Africa (SSA)2. Despite Sub-Saharan African countries being the hardest hit by SCD, they lack proper management strategies for SCD mainly due to a failure to implement national control systems and lack of funding and resources allocated to research2. Most of the progress on the pathophysiology of SCD has been established in high income countries in Europe and the United States of America, where the prevalence of SCD is much lower. To this end, the NIH recently funded the establishment of SPARCO which is coordinated from a hub in Tanzania. SPARCO aims to develop research capacity for SCD through a multidimensional approach which addresses infrastructure; education & training, provision of longitudinal research data; the translation of research into practise and the inclusion of new African sites through SPAN3. To facilitate data standardization, integration and coordination across the three SPARCO sites in Tanzania, Ghana and Nigeria, NIH concurrently funded SADaCC3.
This newsletter will be an informal reporting tool of our milestones to various stakeholders including the funders and for our own internal recording keeping. This issue has sections briefly described below which we hope will be regular features of our newsletter. Featured Articles: This section will highlight newsworthy events happening at the various SPARCO sites, SADaCC, SPAN and other stakeholders. Behind the Scenes: This will highlight personnel profiles from across the consortia. Brag Board: Awards, promotions, achievements and publications from any of the consortia members. Working Groups: A significant portion of the SPARCO and SADaCC activities are led and implemented through working groups. In each issue of Sickle In Africa working groups will outline achievements, lessons and plans for the next reporting period. The working groups are: Skills; Clinical Guidelines; Database & Research.
We welcome feedback and suggestions to improve this newsletter. We look forward to your continued support, articles and input.
SADaCC and SPARCO Hub
1Weatherall DJ. The challenge of haemoglobinopathies in resource-poorcountries. Br J Haematol. 2011 Sep;154(6):736-44.
2Piel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global burend of Sickle Cell Anaemia in children under five, 2010-2050: modelling based on demographics excess mortality, and interventions. PLoS med. 2013; 10(7).
3Makani J, Ofori-Acquah SF, Tluway F, Mulder N, Wonkam A. Sickle cell disease: tipping the balance of genomic research to catalyse discoveries in Africa. Lancet. 2017 Jun 17;389(10087):2355-2358.
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