Cargando…

Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana

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 a...

Descripción completa

Detalles Bibliográficos
Autores principales:	Paintsil, Vivian, Amuzu, Evans Xorse, Nyanor, Isaac, Asafo-Adjei, Emmanuel, Mohammed, Abdul Razak, Yawnumah, Suraj Abubakar, Oppong-Mensah, Yaa Gyamfua, Nguah, Samuel Blay, Obeng, Paul, Dogbe, Elliot Eli, Jonas, Mario, Nembaware, Victoria, Mazandu, Gaston, Ohene-Frempong, Kwaku, Wonkam, Ambroise, Makani, Julie, Ansong, Daniel, Osei-Akoto, Alex
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	Frontiers Media S.A. 2022
Materias:	Genetics
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8908904/ https://www.ncbi.nlm.nih.gov/pubmed/35281803 http://dx.doi.org/10.3389/fgene.2022.802355

Ejemplares similares

Hospitalizations among children with sickle cell disease enrolled in the Kumasi Sickle Cell Pan African Consortium (SPARCo) database: A cross sectional study
por: Oppong–Mensah, Yaa Gyamfua, et al.
Publicado: (2023)

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: recent development and expansion of the universal sickle cell knowledge representation
por: Mazandu, Gaston K, 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)

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

Sickle Cell Disease: Management Options and Challenges in Developing Countries
por: Ansong, Daniel, et al.
Publicado: (2013)

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

Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations
por: Munung, Nchangwi Syntia, et al.
Publicado: (2019)

Penicillin V prophylaxis uptake among children living with sickle cell disease in a specialist sickle cell clinic in Ghana: A cross‐sectional study
por: Odoom, Samuel F., et al.
Publicado: (2022)

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

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

Iron stores in steady‐state sickle cell disease children accessing care at a sickle cell disease clinic in Kumasi, Ghana: A cross‐sectional study
por: Amanor, Ernest, et al.
Publicado: (2022)

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 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)

Organ damage in sickle cell disease study (ORDISS): protocol for a longitudinal cohort study based in Ghana
por: Anie, Kofi A, et al.
Publicado: (2017)

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)

The future of sickle cell disease therapeutics rests in genomics
por: Wonkam, Ambroise
Publicado: (2023)

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

Caregivers' knowledge, attitude, and perception toward pneumococcal infection prophylaxis in pediatric sickle cell disease patients in Kumasi, Ghana
por: Doe, Elom, et al.
Publicado: (2023)

Clitoral size in term newborns in Kumasi, Ghana
por: Asafo-Agyei, Serwah Bonsu, et al.
Publicado: (2017)

O-05: INVESTIGATIONS OF KIDNEY DYSFUNCTION-RELATED GENE VARIANTS IN SICKLE CELL DISEASE PATIENTS IN CAMEROON (SUB-SAHARAN AFRICA)
por: V., NGO BITOUNGUI, et al.
Publicado: (2022)

Biomarkers of sickle cell nephropathy in Senegal
por: Ndour, El Hadji Malick, et al.
Publicado: (2022)

HIV infection in severely malnourished children in Kumasi, Ghana: a cross-sectional prospective study
por: Asafo-Agyei, Serwah Bonsu, et al.
Publicado: (2013)

5610131 A STANDARDISED LANGUAGE TAG PROTOCOL AND WORKFLOW FOR DEVELOPING AND MANAGING MULTILINGUAL ONTOLOGIES: SHOWCASING THE FRENCH SICKLE CELL DISEASE ONTOLOGY (SCDO)
por: Hotchkiss, J., et al.
Publicado: (2023)

Evolutionary history of sickle-cell mutation: implications for global genetic medicine
por: Esoh, Kevin, et al.
Publicado: (2021)

S125: THE ROLE OF THE MICROBIOME AS A SICKLE CELL DISEASE MODIFIER: AN EXPERT REVIEW
por: Oosterwyk, C, et al.
Publicado: (2022)

Normative penile anthropometry in term newborns in Kumasi, Ghana: a cross-sectional prospective study
por: Asafo-Agyei, Serwah Bonsu, et al.
Publicado: (2017)

Sickle cell disease, sickle trait and the risk for venous thromboembolism: a systematic review and meta-analysis
por: Noubiap, Jean Jacques, et al.
Publicado: (2018)

5610603 CLINICAL AND GENETIC PREDICTORS OF SICKLE CELL NEPHROPATHY IN MALAWI
por: Banda, K.H.B., et al.
Publicado: (2023)

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

Treatment for sickle cell disease in Africa: should we invest in haematopoietic stem cell transplantation?
por: Pule, Gift, et al.
Publicado: (2014)

Hemolysis scavenger proteins and renal function marker in children with sickle cell disease at steady state: A cross‐sectional study
por: Fordjour, Fatima A., et al.
Publicado: (2023)

Microbial pathogens associated with acute childhood diarrhoea in Kumasi, Ghana
por: Ashie, Gilbert Kotei, et al.
Publicado: (2017)

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)

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

5593300 INVESTIGATIONS OF KIDNEY DYSFUNCTION-RELATED GENE VARIANTS IN SICKLE CELL DISEASE PATIENTS IN CAMEROON (SUB-SAHARAN AFRICA)
por: NGO BITOUNGUI, V.B., et al.
Publicado: (2023)

5613165 INVESTIGATING VARIANTS ASSOCIATED WITH QUANTITATIVE RED BLOOD CELL PHENOTYPES FROM TOPMED PREDICTIONS IN AFRICAN SICKLE CELL DISEASE POPULATIONS.
por: Samie, N., et al.
Publicado: (2023)

Effects of vaccines in patients with sickle cell disease: a systematic review protocol
por: Wiyeh, Alison Beriliy, et al.
Publicado: (2018)

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

Enablers and barriers to newborn screening for sickle cell disease in Africa: results from a qualitative study involving programmes in six countries
por: Archer, Natasha M, et al.
Publicado: (2022)

Cannot write session to /tmp/vufind_sessions/sess_ndvrd750tmt3qjdqjmq326mi48