Browsing by Author "Paintsil Vivian"

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    Organ damage in sickle cell disease study (ORDISS): protocol for a longitudinal cohort study based in Ghana
    (BJM Open, 2017) Anie A Kofi; Paintsil Vivian; Ansong Daniel; Owusu-Dabo Ellis; Osei-Akoto Alex; Ohene-Frempong Kwaku....et al
    Introduction Sickle cell disease is highly prevalent in Africa with a significant public health burden. Nonetheless, morbidity and mortality in sickle cell disease that result from the progression of organ damage is not well understood. The Organ Damage in Sickle Cell Disease Study (ORDISS) is designed as a longitudinal cohort study to provide critical insight into cellular and molecular pathogenesis of chronic organ damage for the development of future innovative treatment. Methods and analysis ORDISS aims to recruit children aged 0–15 years who attend the Kumasi Centre for Sickle Cell Disease based at the Komfo Anokye Teaching Hospital in Kumasi, Ghana. Consent is obtained to collect blood and urine samples from the children during specified clinic visits and hospitalisations for acute events, to identify candidate and genetic markers of specific organ dysfunction and end-organ damage, over a 3 year period. In addition, data concerning clinical history and complications associated with sickle cell disease are collected. Samples are stored in biorepositories and analysed at the Kumasi Centre for Collaborative Research in Tropical Medicine, Ghana and the Centre for Translational and International Haematology, University of Pittsburgh, USA. Appropriate statistical analyses will be performed on the data acquired. Ethics and dissemination Research ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals, and the key findings presented at national and international conferences.
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    Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
    (BMJ Open, 2021) Anie A Kofi; Olayemi Edeghonghon; Paintsil Vivian; Owusu-Dabo Ellis; Adeyemo Adenike Titilope; Sarfo-Antwi Joseph....et al
    Objectives To provide lay information about genetics and sickle cell disease (SCD) and to identify and address ethical issues concerning the Sickle Cell Disease Genomics of Africa Network covering autonomy and research decision-making, risk of SCD complications and organ damage, returning of genomic findings, biorepository, data sharing, and healthcare provision for patients with SCD. Design Focus groups using qualitative methods. Setting Six cities in Ghana, Nigeria and Tanzania within communities and secondary care. Participants Patients, parents/caregivers, healthcare professionals, community leaders and government healthcare representatives. Results Results from 112 participants revealed similar sensitivities and aspirations around genomic research, an inclination towards autonomous decision-making for research, concerns about biobanking, anonymity in data sharing, and a preference for receiving individual genomic results. Furthermore, inadequate healthcare for patients with SCD was emphasised. Conclusions Our findings revealed the eagerness of patients and parents/caregivers to participate in genomics research in Africa, with advice from community leaders and reassurance from health professionals and policy makers, despite their apprehensions regarding healthcare systems.