Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease

Daniel Kandonga¹, Raphael Zozimus Sangeda^{1

2}, Upendo Masamu¹, Eliah Kazumali³, Agnes Jonathan¹, Michael Msangawale¹, Winfrida Kaihula¹, Julieth Rwegalulila¹, Jesca Ondego¹, Hilda J Tutuba¹, Joyce Ndunguru¹, Emmanuela E Ambrose⁴, Benson R Kidenya^{1

5}, Mbonea Yonazi⁶, Irene Kyomugisha⁷, Wilson Mupfururirwa⁷, Mario Jonas⁷, Victoria Nembaware⁷, Gaston Kuzamunu Mazandu⁷, Andre Pascal Kengne⁸, Ambroise Wonkam^{7

9}, Julie Makani^{1

10}, Emmanuel Balandya^{1

11}

Affiliations

¹ Sickle Cell Programme, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
² Department of Pharmaceutical Microbiology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
³ Statistics Department, Eastern Africa Statistical Training Centre, Dar es Salaam, Tanzania.
⁴ Department of Paediatrics and Child Health, Catholic University of Health and Allied Sciences, Mwanza, Tanzania.
⁵ Department of Biochemistry and Molecular Biology, Catholic University of Health and Allied Sciences, Mwanza, Tanzania.
⁶ Department of Hematology and Blood Transfusion, Muhimbili National Hospital, Dar es Salaam, Tanzania.
⁷ Department of Pathology, Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁸ Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa.
⁹ Department of Genetic Medicine, Johns-Hopkins University School of Medicine, Baltimore, MD, United States.
¹⁰ SickleInAfrica Clinical Coordinating Centre (CCC), Muhimbili National Hospital, Dar es Salaam, Tanzania.
¹¹ Department of Physiology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.

PMID: 39247216
PMCID: PMC11378979
DOI: 10.3389/frhem.2023.1040720

Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease

Daniel Kandonga et al. Front Hematol. 2023.

. 2023:2:1040720.

doi: 10.3389/frhem.2023.1040720. Epub 2023 Apr 10.

Authors

Affiliations

¹ Sickle Cell Programme, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
² Department of Pharmaceutical Microbiology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.
³ Statistics Department, Eastern Africa Statistical Training Centre, Dar es Salaam, Tanzania.
⁴ Department of Paediatrics and Child Health, Catholic University of Health and Allied Sciences, Mwanza, Tanzania.
⁵ Department of Biochemistry and Molecular Biology, Catholic University of Health and Allied Sciences, Mwanza, Tanzania.
⁶ Department of Hematology and Blood Transfusion, Muhimbili National Hospital, Dar es Salaam, Tanzania.
⁷ Department of Pathology, Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁸ Non-Communicable Diseases Research Unit, South African Medical Research Council, Cape Town, South Africa.
⁹ Department of Genetic Medicine, Johns-Hopkins University School of Medicine, Baltimore, MD, United States.
¹⁰ SickleInAfrica Clinical Coordinating Centre (CCC), Muhimbili National Hospital, Dar es Salaam, Tanzania.
¹¹ Department of Physiology, Muhimbili University of Health and Allied Sciences, Dar es Salaam, Tanzania.

PMID: 39247216
PMCID: PMC11378979
DOI: 10.3389/frhem.2023.1040720

Abstract

Background: Sickle cell disease (SCD) is a severe hereditary form of anemia that contributes between 50% and 80% of under-five mortality in Africa. Eleven thousand babies are born with SCD annually in Tanzania, ranking 4^th 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.

Keywords: REDCap; Tanzania; case report form; data science; registry; sickle cell disease.

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Conflict of interest statement

Conflict of interest The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

**FIGURE 1**
Map of Tanzania showing regions where Sickle Pan-African Research Consortium (SPARCO) sickle cell clinics are located (enrollment sites - in yellow) and regions that refer patients to enrollment sites (catchment area - in green) for 2017 to 2021.

**FIGURE 2**
Monthly enrollment trends into the into Sickle Pan African Research Consortium (SPARCO) at Tanzania site between 2017 and 2021.

See this image and copyright information in PMC

References

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Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease

Affiliations

Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Grants and funding

LinkOut - more resources

Full Text Sources