Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease
Daniel Kandonga, Raphael Zozimus Sangeda, Upendo Masamu, Eliah Kazumali, Agnes Jonathan, Michael Msangawale, Winfrida Kaihula, Julieth Rwegalulila, Jesca Ondego, Hilda Tutuba, Joyce Ndunguru, Emmanuela E. Ambrose, Benson R. Kidenya, Mbonea Yonazi, Irene Kyomugisha, Wilson Mupfururirwa, Mario Jonas, Victoria Nembaware, Gaston K. Mazandu, André Pascal Kengne, Ambroise Wonkam, Julie Makani, Emmanuel Balandya
Abstract
Background: after Nigeria, the Democratic Republic of Congo and India. The absence of well-described SCD cohorts is a major barrier to health research in SCD in Africa. Objective: This paper describes the Sickle Pan African Consortium (SPARCO) database in Tanzania, from the development, design of the study instruments, data collection, analysis of data and management of data quality issues. Methods: The SPARCO registry used existing Muhimbili Sickle Cell Cohort (MSC) study case report forms (CRF) and later harmonized data elements from the SickleInAfrica consortium to develop Research Electronic Data Capture (REDCap) instruments. Patients were enrolled through various strategies, including mass screening following media sensitization and health education events during World Sickle Cell Day each June and the SCD awareness month in September. Additional patients were identified through active surveillance of previously participating patients in the MSC. Results: Three thousand eight hundred patients were enrolled between October 2017 and May 2021. Of these, 1,946 (51.21%) were males and 1,864 (48.79%) were females. The hemoglobin phenotype distribution was 3,762 (99%) HbSS, 3 (0.08%) HbSC and 35 (0.92%) HbSb +thalassemia. Hemoglobin levels, admission history, blood transfusion and painful events were recorded from December 2017 to May 2021. Conclusion: The Tanzania SPARCO registry will improve healthcare for SCD in Africa through the facilitation of collaborative data-driven research for SCD.