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PROFESSOR ALDIOUMA GUINDO Deputy Director of the Mali Research Centre to Combat Sickle-cell Disease (CRLD) How did the CRLD data-digitisation project come about? Article 2 of the law establishing the centre states: the missions of the Research Centre to Combat Sickle-cell Disease are promoting research on sickle-cell disease and providing introductory and continuous training on sickle-cell disease. With the support of the Fondation Pierre Fabre, which we have enjoyed since the centre’s founding, we began using REDCap software to collect and analyse clinical data with a view to carrying out clinical research projects. This Foundation support required our creating a Data Unit. This unit is operated by staff trained in research methodology and overseen by a university epidemiologist, whose primary mission is to ensure the data’s quality and their full computerisation. How many patients does this involve? In 2019, the CRLD recorded 1,439 new patients, for a new total of 12,258 sickle-cell patients who must be regularly monitored for the rest of their lifetimes. The data from 2016 to 2019 have been computerised. In 2020, the digitalisation will cover the data from 2010 to 2015. What are your expectations for this project? We hope to reach a critical mass of information on sickle-cell disease, information we can analyse and interpret for a better understanding of the disease, which could lead to changes in how we treat it. The acquisition of preliminary data is also essential for taking part in the Competitive Research Fund programme. We will then disseminate the new knowledge resulting from these activities to practitioners in Mali and the African sub-region. These advances will help fuel national strategies and policies in fighting sickle-cell disease. Lastly, developing clinical research will strengthen the CRLD’s scientific reputation and help us acquire new funding. GOOD TO KNOW Sickle-cell disease, a haemoglobin disease. Sickle-cell disease or sickle-cell disease is a genetic disease of the blood linked to an abnormality of the haemoglobin, the protein responsible for transporting and releasing oxygen to the tissues. The clinical manifestations of sickle-cell disease appear during the first year of life. This disease typically results in chronic anaemia, increased susceptibility to infections, painful crises caused by poor blood circulation and insufficient tissue oxygenation (especially bone), strokes, acute chest syndromes and damage to various organs (source: McCavitTL, 2012). These advances will help fuel national strategies and policies. Fondation Pierre Fabre – 25 OPERATIONS IN 11 COUNTRIES SINCE 2006