Sickle cell disease in sub-Saharan Africa: transferable strategies for prevention and care

K Esoh, E Wonkam-Tingang, A Wonkam - The Lancet Haematology, 2021 - thelancet.com
Sickle cell disease can be life-threatening or chronically debilitating for both children and
adults. Worldwide, more than 300 000 children are born with sickle cell disease every year …

Quality of life in sickle cell disease: what matters

MJ Treadwell, KA Anie - Hematology/Oncology Clinics, 2022 - hemonc.theclinics.com
The World Health Organization defines Quality of Life as an individual's perception of their
position in life in the context of the culture and values systems in which they live and in …

The International Hemoglobinopathy Research Network (INHERENT): An international initiative to study the role of genetic modifiers in hemoglobinopathies

P Kountouris, C Stephanou, NM Archer, F Bonifazi… - Blood, 2021 - ashpublications.org
Hemoglobinopathies, including sickle cell disease (SCD) and thalassemia syndromes,
represent the commonest monogenic diseases in the world. Although their pathogenicity is …

Sickle cell disease is a global prototype for integrative research and healthcare

CDM Royal, M Babyak, N Shah, S Srivatsa… - Advanced …, 2021 - Wiley Online Library
Differences in health outcomes and treatment responses within and between global
populations have been well documented. There is growing recognition of the need to move …

Antenatal screenings and maternal diagnosis among pregnant women in Sao Tome & Principe—Missed opportunities to improve neonatal health: A hospital-based …

A Vasconcelos, S Sousa, N Bandeira… - PLOS Global Public …, 2022 - journals.plos.org
Newborn mortality and adverse birth outcomes (ABOs) in Sao Tome & Príncipe (STP) are
overwhelmingly high, and access to quality-antenatal care (ANC) is one of the strategies to …

[HTML][HTML] Harmonizing the Generation and Pre-publication Stewardship of FAIR Image data

N Bialy, F Alber, B Andrews, M Angelo, B Beliveau… - Arxiv, 2024 - ncbi.nlm.nih.gov
Together with the molecular knowledge of genes and proteins, biological images promise to
significantly enhance the scientific understanding of complex cellular systems and to …

The Sickle Cell Disease Ontology: Recent development and expansion of the universal sickle cell knowledge representation

GK Mazandu, J Hotchkiss, V Nembaware… - Database, 2022 - academic.oup.com
Abstract The Sickle Cell Disease (SCD) Ontology (SCDO, https://scdontology. h3abionet.
org/) provides a comprehensive knowledge base of SCD management, systems and …

[PDF][PDF] The H3Africa Consortium: publication outputs of a pan-African genomics collaboration (2013 to 2020)

A Choudhury, D Sengupta, S Aron… - Africa, the Cradle of …, 2021 - library.oapen.org
Developing a complex collaborative program across multiple African countries,
characterized by a diversity of government models, laws, cultures and norms, resources and …

Skills capacity building for health care services and research through the Sickle Pan African Research Consortium

OE Nnodu, A Osei-Akoto, V Nembaware, J Kent… - Frontiers in …, 2022 - frontiersin.org
Skills development, the building of human capacity, is key to any sustainable capacity
building effort, however, such undertakings require adaptable and tailored strategies. The …

Patient-centric research in the time of COVID-19: conducting ethical COVID-19 research in Africa

V Nembaware, NS Munung, A Matimba, N Tiffin - BMJ global health, 2020 - gh.bmj.com
History suggests that times of crisis in Africa are often exploited for unethical collection and
use of samples and data, and African research participants can become targets of ethics …