5612560 A MONITORING AND EVALUATION FRAMEWORK AND ASSOCIATED TOOLS FOR THE SICKLEINAFRICA CONSORTIUM

Abstract

1Victoria Nembaware, 1Paidamoyo Bodzo, 2Malula Nkanyemka, 2Irene Minja, 2Julie Makani, 3Nicola Mulder, 1,4Ambroise Wonkam on behalf of the SickleInAfrica Consortium 1Division of Human Genetics, Department of Pathology, University of Cape Town, Cape Town, South Africa 2Sickle Cell Programme, Department of Haematology and Blood Transfusion, Muhimbili University of Health and Allied Sciences 3Computational Biology Division, Faculty of Health Sciences, Anzio Road, Observatory, Cape Town, South Africa 1,4McKusick-Nathans Institute of Genetic Medicine and Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA. Background: The SickleInAfrica consortium aims 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) and the Sickle Pan-African Research Consortium (SPARCO), which has a clinical coordinating center (CCC) in Tanzania and SPARCO research sites based in seven countries: Ghana, Nigeria, Mali, Tanzania, Uganda, Zimbabwe and Zambia. To achieve its goals SickleInAfrica is creating a multi-country registry of over 30,000 SCD patients amongst other activities which include: skills development, development of standards of care, maintenance of a SCD Ontology, strengthening of infrastructure and addressing pertinent ethical, legal and social issues. A key challenge is the monitoring and evaluation of activities across the consortium in a consistent manner. Method: To maximize efforts and increase the likelihood of impact of this consortium we developed a consortium-wide outcome-based monitoring and evaluation plan which is informed by existing frameworks and lessons from existing consortia and research projects. In addition, we conducted stakeholder consultation during consortium meetings which were used to continually adjust the system. Most of the framework was imbedded into the consortium website to allow for seamless data collection. Results: We present SickleInAfrica activities and outline the corresponding monitoring and evaluation framework, associated indicators, dashboard and tools which are accessible via the SickleInAfrica website. The proposed framework was designed to be adaptable by other consortia and research initiatives. Summary and Conclusion: To facilitate large-scale monitoring and evaluation of consortium activities, we propose a framework which is mostly web-based. Once stable, such a framework and associated tools will be made available for use by similar initiatives. Reference 1. Makani et al, Lancet Haematol. 2020; 7(2):e98-e9