ArticleFrontiers in hematology2023
Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease.
Article in Frontiers in hematology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- The Sickle Africa Data Coordinating Centre (SADaCC): a data science hub for interdisciplinary sickle cell disease research and training.Database : the journal of biological databases and curation · 2026Article
- "I Know that One Day I Will Be Cured": Perspectives on Acceptability of Curative Therapies for Sickle Cell Disease in Tanzania.Public health genomics · 2026Article
- Experience in the adoption of Research Electronic Data Capture (REDCap) as a tool for medical research in Tanzania.medRxiv : the preprint server for health sciences · 2025Article
- Level of Healthcare Facility and Psychosocial Factors Influence Perceived Self-Efficacy for Appropriate Use of Hydroxyurea: Experience from Caregivers of Children with Sickle Cell Disease in Tanzania.Healthcare (Basel, Switzerland) · 2025Article
- Clinical manifestations of sickle cell disease in Africa and its association with foetal haemoglobin parameters.Communications medicine · 2025Article
- Article
- Strengthening advanced therapy for sickle cell disease in Africa: experience from sickle cell disease centre in Dar es Salaam, Tanzania.BMJ global health · 2025Article
- Caregivers' beliefs about hydroxyurea influence its usage among children with sickle cell disease: a cross-sectional study in Dar-es-Salaam, Tanzania.The Pan African medical journal · 2025Article
- The Ugandan sickle Pan-African research consortium registry: design, development, and lessons.BMC medical informatics and decision making · 2024Article
- Caregivers' Perceived Threat Of Sickle Cell Disease Complications And Its Association With Hydroxyurea Use Among Children With Sickle Cell Disease In Dar Es Salaam, Tanzania.Pediatric health, medicine and therapeutics · 2024Article
- Current challenges and new approaches to implementing optimal management of sickle cell disease in sub-Saharan Africa.Seminars in hematology · 2023Article
Corrections and comments
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Authors and funding
23 authors.
Funding
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 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.
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