Infectious diseases of poverty research data management: opportunities and challenges to capacity strengthening in Africa

Data Management (DM) is a critical, yet often neglected step of research studies, essential to guarantee the integrity of data and validity of conclusions derived from it. To enable meaningful data use (and re-use), investigators and their institutes must therefore be equipped with appropriate DM capacity. Little empirical research so far has explored DM practices in clinical research or the barriers and enablers of their implementation, especially in Low and Middle Income Countries (LMICs). Using a mixed-methods design, this thesis addresses this important and timely gap. A systematic review and meta-analysis of schistosomiasis treatment efficacy studies first demonstrates the pitfalls of aggregated data for re-use, and uncovers varied data management and analysis practices within this research community. The case of schistosomiasis (a neglected, under-researched tropical disease) is contrasted with that of malaria. Through its well-established data-sharing platform, the World- Wide Antimalarial Resistance Network (WWARN) enables an in-depth exploration of datasets and accompanying study documentation from 108 antimalarial trials performed in Africa. This exploratory analysis shows that DM capacity development needs particularly concern comprehensive annotation and transparent handling of study datasets. Two qualitative case studies in Dakar, Senegal and Brazzaville, Republic of the Congo complement this systematic description of DM across Africa. Through indepth interviews and observations of local practices, I examine clinical research staff's knowledge, attitudes, experiences and perceptions of DM, as well as the constraints within which they operate DM systems (DMS). Findings confirm that robust DMS depend on adequate financing and strong infrastructure, but also on an overall enabling environment where the importance of DM is recognised. Results from this work highlight priority areas for clinical research DM capacity strengthening in LMICs, emphasising the necessity to raise awareness of DM's complexity and to establish DM as a valued professional role.