ArticleFrontiers in genetics2019
Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations.
Article in Frontiers in genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 29 citations in OpenAlex.
- Clinical and Genetic Predictors of Sickle Cell Nephropathy: A Global Systematic Review.Omics : a journal of integrative biology · 2025Pooled it
- Beyond the Diagnosis: Lived Experiences of People with Sickle Cell Disease in South India.Journal of racial and ethnic health disparities · 2026Article
- Patients as Partners in Sickle Cell Disease Research in Africa: A Framework for Equitable Patient-Engaged Health Research.The patient · 2026Article
- 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
- 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
- Spatiotemporal evolution of online interest in assisted reproductive technology: a two-decade global analysis through google trends.BMC public health · 2025Observational
- 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
- Looking ahead: ethical and social challenges of somatic gene therapy for sickle cell disease in Africa.Gene therapy · 2024Review
- Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease.Frontiers in hematology · 2023Article
- Skills Capacity Building For Health Care Services and Research Through the Sickle Pan African Research Consortium.Frontiers in genetics · 2022Article
- Development of multi-level standards of care recommendations for sickle cell disease: Experience from SickleInAfrica.Frontiers in genetics · 2022Article
- Evaluation of left ventricular systolic function in children with sickle cell anemia: contribution of 2D strain.F1000Research · 2022Article
- Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana.Frontiers in genetics · 2022Article
- Article
- The Sickle Cell Disease Ontology: Enabling Collaborative Research and Co-Designing of New Planetary Health Applications.Omics : a journal of integrative biology · 2020Article
- Caring for Africa's sickle cell children: will we rise to the challenge?BMC medicine · 2020Article
Corrections and comments
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Authors and funding
14 authors at 5 institutions in 5 countries.
Funding
Abstract
Sickle cell disease (SCD) is one of the most prevalent genetic conditions in sub-Saharan Africa. It is a chronic, lifelong disease often characterized by severe pain. However, SCD has received little investment terms of health research, though there is currently a growing pool of SCD data from health and research facilities in different countries. To facilitate research on SCD in Africa, the SickleInAfrica consortium has established a SickleInAfrica registry. The registry will store a systematic collection of longitudinal data from persons with SCD across sub-Saharan Africa, and currently, participants are being enrolled in Ghana, Nigeria, and Tanzania. In establishing this registry, the SickleInAfrica consortium decided to actively identify and anticipate possible ethical issues that may arise in the development and management of the registry. This was motivated, in part, by the near absence of well documented ethical issues for registry research in Africa, more-so for registries enrolling participants across multiple countries and for a genetic condition. The consortium aims to establish standards for the equitable use of data stored in the registry. This paper presents a comprehensive report on the ethical considerations that came up in setting up a genetic disease registry across multiple African countries and how they were addressed by the SickleInAfrica consortium. Major issues included: active involvement of patients in the initiation and management of the registry; questions of assent and re-consent; the importance of ensuring that fears of exploitation are not replicated in African-African research collaborations; and the importance of public engagement in the management of registries. Drawing on this experience, SickleInAfrica plans to set up an ethics helpdesk for genetic disease registries and research in Africa.
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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.