Cargando…

Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

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 healt...

Descripción completa

Detalles Bibliográficos
Autores principales:	Munung, Nchangwi Syntia, Nembaware, Victoria, de Vries, Jantina, Bukini, Daima, Tluway, Furahini, Treadwell, Marsha, Sangeda, Raphael Zozimus, Mazandu, Gaston, Jonas, Mario, Paintsil, Vivian, Nnodu, Obiageli E., Balandya, Emmanuel, Makani, Julie, Wonkam, Ambroise
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	Frontiers Media S.A. 2019
Materias:	Genetics
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6795756/ https://www.ncbi.nlm.nih.gov/pubmed/31649726 http://dx.doi.org/10.3389/fgene.2019.00943

Ejemplares similares

Editorial: Building capacity for sickle cell disease research and healthcare
por: Nembaware, Victoria, et al.
Publicado: (2023)

Assent, parental consent and reconsent for health research in Africa: thematic analysis of national guidelines and lessons from the SickleInAfrica registry
por: Munung, Nchangwi Syntia, et al.
Publicado: (2022)

Establishing a database for sickle cell disease patient mapping and survival tracking: The sickle pan-african research consortium Nigeria example
por: Nnodu, Obiageli, et al.
Publicado: (2022)

Skills Capacity Building For Health Care Services and Research Through the Sickle Pan African Research Consortium
por: Nnodu, Obiageli Eunice, et al.
Publicado: (2022)

Possible Risk Factors for Severe Anemia in Hospitalized Sickle Cell Patients at Muhimbili National Hospital, Tanzania: Protocol for a Cross-Sectional Study
por: Tluway, Furahini, et al.
Publicado: (2018)

Lived Experiences of Fragile X Syndrome Caregivers: A Scoping Review of Qualitative Studies
por: Kamga, Karen Kengne, et al.
Publicado: (2020)

Negotiating political power and stigma around fragile X Syndrome in a rural village in Cameroon: A tale of a royal family and a community
por: Kengne Kamga, Karen, et al.
Publicado: (2021)

Explanatory models for the cause of Fragile X Syndrome in rural Cameroon
por: Kengne Kamga, Karen, et al.
Publicado: (2021)

Sickle cell disease and H3Africa: enhancing genomic research on cardiovascular diseases in African patients
por: Wonkam, Ambroise, et al.
Publicado: (2015)

Cascade Testing for Fragile X Syndrome in a Rural Setting in Cameroon (Sub-Saharan Africa)
por: Kengne Kamga, Karen, et al.
Publicado: (2020)

The Sickle Cell Disease Ontology: recent development and expansion of the universal sickle cell knowledge representation
por: Mazandu, Gaston K, et al.
Publicado: (2022)

Equity in international health research collaborations in Africa: Perceptions and expectations of African researchers
por: Munung, Nchangwi Syntia, et al.
Publicado: (2017)

Development of multi-level standards of care recommendations for sickle cell disease: Experience from SickleInAfrica
por: Paintsil, Vivian, et al.
Publicado: (2023)

The Sickle Cell Disease Ontology: Enabling Collaborative Research and Co-Designing of New Planetary Health Applications
por: Nembaware, Victoria, et al.
Publicado: (2020)

Dissecting in silico Mutation Prediction of Variants in African Genomes: Challenges and Perspectives
por: Bope, Christian Domilongo, et al.
Publicado: (2019)

Patient-centric research in the time of COVID-19: conducting ethical COVID-19 research in Africa
por: Nembaware, Victoria, et al.
Publicado: (2020)

Knowledge and Challenges Associated With Hearing Impairment in Affected Individuals From Cameroon (Sub-Saharan Africa)
por: Wonkam-Tingang, Edmond, et al.
Publicado: (2021)

Clinical characteristics and risk factors of relative systemic hypertension and hypertension among sickle cell patients in Cameroon
por: Nguweneza, Arthemon, et al.
Publicado: (2022)

Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana
por: Paintsil, Vivian, et al.
Publicado: (2022)

Model framework for governance of genomic research and biobanking in Africa – a content description
por: Yakubu, Aminu, et al.
Publicado: (2018)

Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
por: Tindana, Paulina, et al.
Publicado: (2019)

Sickle cell disease in Africa: an urgent need for longitudinal cohort studies
por: Wonkam, Ambroise, et al.
Publicado: (2019)

Perspectives on Building Sustainable Newborn Screening Programs for Sickle Cell Disease: Experience from Tanzania
por: Bukini, Daima, et al.
Publicado: (2021)

Prevalence and Factors Associated with Human Parvovirus B19 Infection in Sickle Cell Patients Hospitalized in Tanzania
por: Urio, Florence, et al.
Publicado: (2019)

Proceedings of a Sickle Cell Disease Ontology workshop — Towards the first comprehensive ontology for Sickle Cell Disease
por: Mulder, Nicola, et al.
Publicado: (2016)

White Paper: Pathways to Progress in Newborn Screening for Sickle Cell Disease in Sub-Saharan Africa
por: Hsu, Lewis, et al.
Publicado: (2018)

Investigations of Kidney Dysfunction-Related Gene Variants in Sickle Cell Disease Patients in Cameroon (Sub-Saharan Africa)
por: Ngo-Bitoungui, Valentina J., et al.
Publicado: (2021)

Sickle Cell Disease: New Opportunities and Challenges in Africa
por: Makani, J., et al.
Publicado: (2013)

Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
por: Anie, Kofi A, et al.
Publicado: (2021)

Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries
por: de Vries, Jantina, et al.
Publicado: (2017)

Nasopharyngeal Carriage and Antibiogram of Pneumococcal and Other Bacterial Pathogens from Children with Sickle Cell Disease in Tanzania
por: Mutagonda, Ritah F, et al.
Publicado: (2022)

Implementation science research for the scale-up of evidence-based interventions for sickle cell disease in africa: a commentary
por: Gyamfi, Joyce, et al.
Publicado: (2021)

Public health use of HIV phylogenetic data in sub-Saharan Africa: ethical issues
por: Jamrozik, Euzebiusz, et al.
Publicado: (2023)

Hydroxyurea-Induced miRNA Expression in Sickle Cell Disease Patients in Africa
por: Mnika, Khuthala, et al.
Publicado: (2019)

Identifying genetic variants and pathways associated with extreme levels of fetal hemoglobin in sickle cell disease in Tanzania
por: Nkya, Siana, et al.
Publicado: (2020)

Small is beautiful: demystifying and simplifying standard operating procedures: a model from the ethics review and consultancy committee of the Cameroon Bioethics Initiative
por: Ouwe Missi Oukem-Boyer, Odile, et al.
Publicado: (2016)

Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents
por: Munung, Nchangwi Syntia, et al.
Publicado: (2016)

Decreased Hepcidin Levels Are Associated with Low Steady-state Hemoglobin in Children With Sickle Cell Disease in Tanzania
por: Lee, Nathaniel, et al.
Publicado: (2018)

Mapping experiences and perspectives of equity in international health collaborations: a scoping review
por: Faure, Marlyn C., et al.
Publicado: (2021)

Considering equity in global health collaborations: A qualitative study on experiences of equity
por: Faure, Marlyn C., et al.
Publicado: (2021)

Cannot write session to /tmp/vufind_sessions/sess_kfofq935nf5vbj0e8rukcgf51h