ArticleFrontiers in genetics2022
Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana.
Article in Frontiers in genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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Who cites it
18 citing papers in PubMed, 32 citations in OpenAlex.
- Perception among adult sickle cell patients on the use of herbal medicine in the management of sickle cell disease in Ghana: a qualitative study.Journal of community genetics · 2026Article
- Implementation of a Prospective Birth Cohort for Newborn Screening and Early Linkage to Comprehensive Sickle Cell Disease Care in a Low-Resource Setting.International journal of neonatal screening · 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
- Genetic self-counselors in Tunisia: the role of health education in hemoglobinopathies prevention among high school students.Orphanet journal of rare diseases · 2025Article
- Clinical manifestations of sickle cell disease in Africa and its association with foetal haemoglobin parameters.Communications medicine · 2025Article
- Article
- Osteoarticular Complications of Sickle Cell Disease in Bukavu: A Retrospective Multicenter Cross-Sectional Study.Health science reports · 2025Article
- Beyond Childhood: Adult and Adolescent Sickle Cell Disease and Outcomes in Northern Ghana.EJHaem · 2025Article
- Article
- Transition Readiness of Pediatric Sickle Cell Patients to Adult Clinic in a Teaching Hospital, Ghana.Advances in hematology · 2025Article
- The Ugandan sickle Pan-African research consortium registry: design, development, and lessons.BMC medical informatics and decision making · 2024Article
- Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020-2023).International journal of neonatal screening · 2024Review
- Caregivers' knowledge, attitude, and perception toward pneumococcal infection prophylaxis in pediatric sickle cell disease patients in Kumasi, Ghana.Health science reports · 2023Article
- Evaluation of treatment patterns, healthcare resource utilization and cost of illness for sickle cell disease in Ghana: a private medical insurance claims database study.BMC health services research · 2023Article
- Systematic Literature Review Shows Gaps in Data on Global Prevalence and Birth Prevalence of Sickle Cell Disease and Sickle Cell Trait: Call for Action to Scale Up and Harmonize Data Collection.Journal of clinical medicine · 2023Review
- Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease.Frontiers in hematology · 2023Article
- Bridging the gaps in newborn screening programmes: Challenges and opportunities to detect haemoglobinopathies in Africa.African journal of laboratory medicine · 2023Review
- Penicillin V prophylaxis uptake among children living with sickle cell disease in a specialist sickle cell clinic in Ghana: A cross-sectional study.Health science reports · 2022Article
Corrections and comments
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Authors and funding
19 authors at 4 institutions in 3 countries.
Funding
Abstract
Sickle cell disease (SCD) is the most common clinically significant hemoglobinopathy, characterized by painful episodes, anemia, high risk of infection, and other acute and chronic complications. In Africa, where the disease is most prevalent, large longitudinal data on patients and their outcomes are lacking. This article describes the experiences of the Kumasi Center for SCD at the Komfo Anokye Teaching Hospital (KCSCD-KATH), a Sickle Pan-African Research Consortium (SPARCO) site and a SickleInAfrica Consortium member, in establishing a SCD registry for the evaluation of the outcomes of patients. It also provides a report of a preliminary analysis of the data. The process of developing the registry database involved comprehensive review of the center's SCD patient medical records, incorporating data elements developed by the SickleInAfrica Consortium and obtaining ethical clearance from the local Institutional Review Board. From December 2017 to March 2020, 3,148 SCD patients were enrolled into the SCD registry. Enrollment was during the SCD outpatient clinic visits or through home visits. A significant proportion of the patients was from the newborn screening cohort (50.3%) and was males (52.9%). SCD-SS, SCD-SC, and Sβ
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.