Imperial College London

Dr Kofi A Anie MBE

Faculty of MedicineFaculty of Medicine Centre

 
 
 
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Contact

 

+44 (0)20 8453 2060k.anie Website

 
 
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Location

 

Central Middlesex HospitalCentral Middlesex Hospital

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Summary

 

Publications

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59 results found

Munung NS, Kamga KK, Treadwell MJ, Dennis-Antwi J, Anie KA, Bukini D, Makani J, Wonkam Aet al., 2024, Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania., Eur J Hum Genet

Sickle cell disease (SCD) is a single gene blood disorder characterised by frequent episodes of pain, chronic anaemic, acute chest syndrome, severe disease complications and lifelong debilitating multi-system organ damage. Genetic testing and screening programs for SCD and the sickle cell trait (SCT) are valuable for early diagnosis and management of children living with SCD, and in the identification of carriers of SCT. People with SCT are for the most part asymptomatic and mainly identified as through genetic testing or when they have a child with SCD. This qualitative study explored perceptions towards genetic testing for SCD and SCT in Cameroon, Ghana, and Tanzania. The results show a general preference for newborn screening for SCD over prenatal and premarital/preconception testing, primarily due to its simpler decision-making process and lower risk for stigmatization. Premarital testing for SCT was perceived to be of low public health value, as couples are unlikely to alter their marriage plans despite being aware of their risk of having a child with SCD. Adolescents were identified as a more suitable population for SCT testing. In the case of prenatal testing, major concerns were centred on cultural, religious, and personal values on pregnancy termination. The study revealed a gender dimension to SCD/SCT testing. Participants mentionned that women bear a heightened burden of decision making in SCD/SCT testing, face a higher risk of rejection by potential in-laws/partners if the carriers of SCT, as well as the possibility of  divorce if they have a child with SCD. The study highlights the complex cultural, ethical, religious and social dynamics surrounding genetic testing for SCD and emphasises the need for public education on SCD and the necessity of incorporating genetic and psychosocial counselling into SCD/SCT testing programs.

Journal article

Munung NS, Treadwell M, Kamga KK, Dennis-Antwi J, Anie K, Bukini D, Makani J, Wonkam Aet al., 2024, 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., Qual Life Res, Vol: 33, Pages: 423-432

PURPOSE: Sickle cell disease (SCD) is an inherited blood disorder characterized by unpredictable episodes of acute pain and numerous health complications. Individuals with SCD often face stigma from the public, including perceptions that they are lazy or weak tending to exaggerate their pain crisis, which can profoundly impact their quality of life (QoL). METHODS: In a qualitative phenomenological study conducted in Cameroon, Ghana, and Tanzania, we explored stakeholders' perceptions of SCD-related stigma using three analytical frameworks: Bronfenbrenner's Ecological Systems Theory; The Health Stigma and Discriminatory Framework; and A Public Health Framework for Reducing Stigma. RESULTS: The study reveals that SCD-related stigma is marked by prejudice, negative labelling and social discrimination, with derogatory terms such as sickler, ogbanje (one who comes and goes), sika besa (money will finish), ene mewu (I can die today, I can die tomorrow), vampire (one who consumes human blood), and Efiewura (landlord-of the hospital), commonly used to refer to individuals living with SCD. Drivers of stigma include frequent crises and hospitalizations, distinct physical features of individuals living with SCD, cultural misconceptions about SCD and its association with early mortality. Proposed strategies for mitigating stigma include public health education campaigns about SCD, integrating SCD into school curricula, healthcare worker training and community engagement. CONCLUSION: The results highlight the importance of challenging stigmatizing narratives on SCD and recognizing that stigmatization represents a social injustice that significantly diminishes the QoL of individuals living with SCD.

Journal article

Paintsil V, Ally M, Isa H, Anie KA, Mgaya J, Nkanyemka M, Nembaware V, Oppong-Mensah YG, Ndobho F, Chirande L, Makubi A, Nnodu O, Wonkam A, Makani J, Ohene-Frempong Ket al., 2023, Development of multi-level standards of care recommendations for sickle cell disease: Experience from SickleInAfrica, FRONTIERS IN GENETICS, Vol: 13

Journal article

Munung NS, Nembaware V, Osei-Tutu L, Treadwell M, Chide OE, Bukini D, Tutuba H, SickleInAfrica ELSI WG, Wonkam Aet al., 2022, Assent, parental consent and reconsent for health research in Africa: thematic analysis of national guidelines and lessons from the SickleInAfrica registry., BMC Med Ethics, Vol: 23

The enrolment of children and adolescents in health research requires that attention to be paid to specific assent and consent requirements such as the age range for seeking assent; conditions for parental consent (and waivers); the age group required to provide written assent; content of assent forms; if separate assent and parental consent forms should be used, consent from emancipated young adults; reconsent at the age of adulthood when a waiver of assent requirements may be appropriate and the conditions for waiving assent requirements. There is however very little available information for researchers and ethics committees on how to navigate these different issues. To provide guidance to research initiatives, the SickleInAfrica consortium conducted a thematic analysis of a sample of research ethics guidelines and procedures in African countries, to identify guidance for assent requirements in health research. The thematic analysis revealed that 12 of 24 African countries specified the age group for which assent is required. The minimum age for written assent varied across the countries. Five countries, Algeria, Botswana, Cameroon, Nigeria and The Democratic Republic of Congo require consent from both parents/family council in certain circumstances. Botswana, Nigeria, South Africa and Uganda have specific assent/consent requirements for research with emancipated minors. South Africa and Algeria requires re-consent at onset of adulthood. Five countries (Botswana, Cameroon, Nigeria, South Africa and Tanzania) specified conditions for waiving assent requirements. The CIOMS and the ICH-GCP guidelines had the most comprehensive information on assent requirements compared to other international guidelines. An interactive map with assent requirements for different African countries is provided. The results show a major gap in national regulations for the inclusion of minors in health research. The SickleInAfrica experience in setting up a multi-country SCD registr

Journal article

Treadwell MJ, Anie KA, 2022, Quality of Life in Sickle Cell Disease: What Matters, HEMATOLOGY-ONCOLOGY CLINICS OF NORTH AMERICA, Vol: 36, Pages: 1137-1149, ISSN: 0889-8588

Journal article

Ampomah MA, Drake JA, Anum A, Amponsah B, Dei-Adomakoh Y, Anie K, Mate-Kole CC, Jonassaint CR, Kirkham FJet al., 2022, A case-control and seven-year longitudinal neurocognitive study of adults with sickle cell disease in Ghana, BRITISH JOURNAL OF HAEMATOLOGY, Vol: 199, Pages: 411-426, ISSN: 0007-1048

Journal article

Eziefula C, Shah F, Anie KA, 2022, Promoting Adherence to Iron Chelation Treatment in Beta-Thalassemia Patients, PATIENT PREFERENCE AND ADHERENCE, Vol: 16, Pages: 1423-1437, ISSN: 1177-889X

Journal article

Anie KA, Olayemi E, Paintsil V, Owusu-Dabo E, Adeyemo TA, Sani MU, Galadanci NA, Nnodu O, Tluway F, Adjei DN, Mensah P, Sarfo-Antwi J, Nwokobia H, Gambo A, Benjamin A, Salim A, Osae-Larbi JA, Ofori-Acquah SF, SickleGenAfrica Networket al., 2021, Sickle cell disease genomics of Africa (SickleGenAfrica) network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria, and Tanzania, BMJ Open, Vol: 11, ISSN: 2044-6055

ObjectivesTo provide lay information about genetics and sickle cell disease (SCD), and to identify and address ethical issues concerning SickleGenAfrica 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.DesignFocus groups utilising qualitative methods.SettingSix cities in Ghana, Nigeria, and Tanzania within communities and secondary care.ParticipantsPatients, parents/caregivers, healthcare professionals, community leaders, and government healthcare representatives. ResultsResults from 112 participants revealed similar sensitivities and aspirations around genomic research, an inclination towards autonomous decision-making for research, concerns about bio-banking, anonymity in data sharing, and a preference for receiving individual genomic results. Furthermore, inadequate healthcare for patients with SCD was emphasised.ConclusionsOur 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.

Journal article

Inusa BPD, Jacob E, Dogara L, Anie KAet al., 2021, Racial inequalities in access to care for young people living with pain due to sickle cell disease, LANCET CHILD & ADOLESCENT HEALTH, Vol: 5, Pages: 7-9, ISSN: 2352-4642

Journal article

Layton D, Piel F, Telfer P, 2020, Real-time national survey of COVID-19 in hemoglobinopathy and rare inherited anemia patients, Haematologica: the hematology journal, Vol: 105, Pages: 2651-2654, ISSN: 0390-6078

Journal article

Nembaware V, Mazandu GK, Hotchkiss J, Safari Serufuri J-M, Kent J, Kengne AP, Anie K, Munung NS, Bukini D, Bitoungui VJN, Munube D, Chirwa U, Chunda-Liyoka C, Jonathan A, Flor-Park MV, Esoh KK, Jonas M, Mnika K, Oosterwyk C, Masamu U, Morrice J, Uwineza A, Nguweneza A, Banda K, Nyanor I, Adjei DN, Siebu NE, Nkanyemka M, Kuona P, Tayo BO, Campbell A, Oron AP, Nnodu OE, Painstil V, Makani J, Mulder N, Wonkam Aet al., 2020, The Sickle Cell Disease Ontology: Enabling Collaborative Research and Co-Designing of New Planetary Health Applications, OMICS-A JOURNAL OF INTEGRATIVE BIOLOGY, Vol: 24, Pages: 559-567, ISSN: 1536-2310

Journal article

Colaco CB, Sadana V, Anie K, 2020, YOGA-THERAPY: IMPROVEMENT IN PSORIATIC ARTHRITIS PROMS AT 4 MONTHS, Annual European Congress of Rheumatology (EULAR), Publisher: BMJ PUBLISHING GROUP, Pages: 1944-1944, ISSN: 0003-4967

Conference paper

Chinegwundoh FI, Smith S, Anie KA, 2020, Treatments for priapism in boys and men with sickle cell disease., Cochrane Database Syst Rev, Vol: 4, Pages: CD004198-CD004198

BACKGROUND: Sickle cell disease comprises a group of genetic haemoglobin disorders. The predominant symptom associated with sickle cell disease is pain resulting from the occlusion of small blood vessels by abnormally 'sickle-shaped' red blood cells. There are other complications, including chronic organ damage and prolonged painful erection of the penis, known as priapism. Severity of sickle cell disease is variable, and treatment is usually symptomatic. Priapism affects up to half of all men with sickle cell disease, however, there is no consistency in treatment. We therefore need to know the best way of treating this complication in order to offer an effective interventional approach to all affected individuals. This is an update of a previously published review. OBJECTIVES: To assess the benefits and risks of different treatments for stuttering (repeated short episodes) and fulminant (lasting for six hours or more) priapism in sickle cell disease. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, which comprises references identified from comprehensive electronic database searches and handsearches of relevant journals and abstract books of conference proceedings. We also searched trial registries. Date of the most recent search of the Group's Haemoglobinopathies Trials Register: 09 September 2019. Date of most recent search of trial registries and of Embase: 01 October 2019. SELECTION CRITERIA: All randomised or quasi-randomised controlled trials comparing non-surgical or surgical treatment with placebo or no treatment, or with another intervention for stuttering or fulminant priapism. DATA COLLECTION AND ANALYSIS: The authors independently extracted data and assessed the risk of bias of the trials. MAIN RESULTS: Three trials with 102 participants were identified and met the criteria for inclusion in this review. These trials compared stilboestrol to placebo, sildenafil to placebo and a four

Journal article

Adekile A, Anie KA, Ben Hamda C, Brown B, Bukini D, Campbell A, Chaouch M, Chimusa E, Chunda-Liyoka C, Dennis-Antwi J, Derebail VK, Flor-Park M, Geard A, Ghedira K, Haendel M, Hanchard NA, Hotchkiss J, Jonas M, Ibrahim M, Ingram C, Inusa B, Jimoh AO, Jupp S, Kamga K, Kashim ZA, Knight-Madden J, Landoure G, Lopez-Sall P, Makani J, Malasa L, Masekoameng T, Mazandu G, Mnika K, Mulder N, Munung NS, Munube D, Mwita L, Nembaware V, Nnodu O, Ofori-Acquah S, Ohene-Frempong K, Osei-Akoto A, Paintsil V, Panji S, Rahimy MC, Royal C, Sangeda RZ, Tayo B, Tiouiri I, Tluway F, Treadwell M, Tshilolo L, Vasilevsky N, Waiswa KM, Wonkam Aet al., 2019, The Sickle Cell Disease Ontology: enabling universal sickle cell-based knowledge representation, DATABASE-THE JOURNAL OF BIOLOGICAL DATABASES AND CURATION, ISSN: 1758-0463

Journal article

Inusa BPD, Hsu LL, Kohli N, Patel A, Ominu-Evbota K, Anie KA, Atoyebi Wet al., 2019, Sickle Cell Disease-Genetics, Pathophysiology, Clinical Presentation and Treatment, INTERNATIONAL JOURNAL OF NEONATAL SCREENING, Vol: 5

Journal article

Dennis-Antwi JA, Ohene-Frempong K, Anie KA, Dzikunu H, Agyare VA, Boadu RO, Antwi JS, Asafo MK, Anim-Boamah O, Asubonteng AK, Agyei S, Wonkam A, Treadwell MJet al., 2019, Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana, JOURNAL OF GENETIC COUNSELING, Vol: 28, Pages: 102-118, ISSN: 1059-7700

Journal article

Bukini D, deVries J, Treadwell M, Anie K, Dennis-Antwi J, Kamga KK, McCurdy S, Ohene-Frempong K, Makani J, Wonkam Aet al., 2019, Exploring the Role of Shared Decision Making in the Consent Process for Pediatric Genomics Research in Cameroon, Tanzania, and Ghana., AJOB Empir Bioeth, Vol: 10, Pages: 182-189

Background: It is customarily perceived that in Africa, decisions around research participation may be based not only on individual reflection but also on discussions with others. Some authors have argued that such decision making is reflective of a more traditional communitarian African worldview; one critique of such a perspective is that it is lacking an empirical grounding. In this study, we explore decision making around enrollment in sickle cell genomics research in three countries in Africa, namely, Ghana, Cameroon, and Tanzania. Particularly, we focus on exploring the role of shared decision making with regard to participating in genomic studies. Results: We involved 64 participants in 15 individual interviews or in 49 focus-group discussions with research participants in rural and urban Tanzania (n = 20), Ghana (n = 30), and Cameroon (n = 14). We used a vignette to explore decision making around enrollment of children in sickle cell genomics research. Data were imported in NVivo11 and analyzed using thematic content analysis. Our findings indicate that the majority of the participants from both rural and urban settings prefer to make their own individual decisions and not consult with extended family or community leaders. Shared decision making was only considered necessary for individuals who were perceived to be in some way vulnerable. Conclusion: We found very limited support for shared decision making as the primary process for decision making about research participation. While consultation was considered important to support individual decision making, particularly when parents were perceived as vulnerable, there was no suggestion in our data that shared decision making would be a more important or valuable means of seeking consent for research participation in the African research context.

Journal article

Inusa BPD, Anie KA, Lamont A, Dogara LG, Ojo B, Ijei I, Atoyebi W, Gwani L, Gani E, Hsu Let al., 2018, Utilising the 'Getting to Outcomes (R)' Framework in Community Engagement for Development and Implementation of Sickle Cell Disease Newborn Screening in Kaduna State, Nigeria, INTERNATIONAL JOURNAL OF NEONATAL SCREENING, Vol: 4

Journal article

Sadana V, Cartwright T, Cahill M, Anie K, Colaco CBet al., 2018, YOGA-THERAPY FOR RHEUMATOID ARTHRITIS: RAPID IMPROVEMENT IN PROMS, Congress of the European-League-Against-Rheumatism (EULAR), Publisher: BMJ PUBLISHING GROUP, Pages: 1852-1853, ISSN: 0003-4967

Conference paper

Inusa BPD, Wale A, Hassan AA, Idhate T, Dogara L, Ijei I, Qin Y, Anie K, Lawson JO, Hsu Let al., 2018, Low-dose hydroxycarbamide therapy may offer similar benefit as maximum tolerated dose for children and young adults with sickle cell disease in low-middle-income settings., F1000Res, Vol: 7

The multiple clinical benefits of hydroxycarbamide in sickle cell disease are supported by a large body of evidence. The maximum tolerated dose (MTD) is the regimen recommended by guidelines from a panel of National Heart, Lung, and Blood Institute (NHLBI) experts, but other dosage regimens have been used in babies (BABY-HUG) 9 to 18 months old (20 mg/kg per day) and developing countries such as India (10 mg/kg per day); however, there has been no direct comparison of the efficacy, effectiveness, or cost-effectiveness of these different regimens. The purpose of this review was to investigate the current situation with various hydroxycarbamide regimens with particular relevance to low-middle-income countries. In regard to methodology, a literature review was undertaken by using multiple databases in PubMed and Google and the search terms included sickle cell disease, hydroxyurea, hydroxycarbamide, sickle cell anaemia, low-middle-income countries, Sub-Saharan Africa, and India. Although MTD regimens have been widely used in research, especially within North America, clinical trials elsewhere tend to use fixed-dose regimens. In a survey of haematologists across Europe and Africa, 60% (75% response rate) did not use the MTD regimen for hydroxycarbamide treatment of sickle cell disease. The recommendations are (1) for practical purposes to commence using fixed-dose hydroxycarbamide in line with BABY-HUG recommendations and then (2) to consider or propose a trial comparing MTD escalation with various fixed doses and to include as end points health-related quality of life, haemoglobin F levels, adherence, and cost-effectiveness.

Journal article

Anie KA, Paintsil V, Owusu-Dabo E, Ansong D, Osei-Akoto A, Ohene-Frempong K, Aikins Amissah K, Addofoh N, Bonwin Ackah E, Owusu-Ansah AT, Ofori-Acquah SFet al., 2017, Organ damage in sickle cell disease study (ORDISS): protocol for a longitudinal cohort study based in Ghana, BMJ Open, Vol: 7, ISSN: 2044-6055

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.

Journal article

Chinegwundoh FI, Smith S, Anie KA, 2017, Treatments for priapismin boys andmen with sickle cell disease, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X

Journal article

Cho G, Anie KA, Buckton J, Kiilu P, Layton M, Alexander L, Hemmaway C, Sutton D, Amos C, Dore CJ, Kahan B, Meredith Set al., 2016, SWIM (sickle with ibuprofen and morphine) randomised controlled trial fails to recruit: lessons learnt, BMJ Open, Vol: 6, ISSN: 2044-6055

ObjectivesSickle With Ibuprofen and Morphine (SWIM) Trial was designed to assess whether co-administration of ibuprofen (a non-steroidal anti-inflammatory drug) resulted in a reduction of opioid consumption delivered by patient controlled analgesia (PCA) for acute pain in sickle cell disease.DesignA randomised, placebo-controlled, double-blind trial.SettingUnited Kingdom multicentre trial in acute hospital setting.ParticipantsAdults with sickle cell disease of any gender and phenotype aged 16 years and over.InterventionsOral ibuprofen at a dose of 800mg three times daily or placebo in addition to opioids (morphine or diamorphine) administered via PCA pump for up to four days.Main outcome measuresThe primary outcome measure was opioid consumption over 4 days following randomisation.ResultsThe SWIM trial closed early because it failed to randomise to its target of 316 patients within a reasonable time.ConclusionsThe key issues identified include the unanticipated length of time between informed consent and randomisation, difficulties in randomisation of patients in busy emergency departments, availability of trained staff at weekends and out of hours, fewer centres than expected using PCA routinely for sickle cell pain treatment, lack of research staff and support for participation, and the trial design. There are implications for future UK trials in sickle cell disease.

Journal article

Anie KA, Treadwell MJ, Grant AM, Dennis-Antwi JA, Asafo MK, Lamptey ME, Ojodu J, Yusuf C, Otaigbe A, Ohene-Frempong Ket al., 2016, Community Engagement to Inform the Development of a Sickle Cell Counselor Training and Certification Program in Ghana, Journal of Community Genetics, Vol: 7, Pages: 195-202, ISSN: 1868-310X

Sickle cell disease (SCD) and sickle cell trait (SCT) are highly prevalent in Africa. Despite public health implications, there is limited understanding of community issues for implementing newborn screening and appropriate family counseling. We conducted a three-day workshop in Kumasi, Ghana, with community leaders as lay program development advisors to assist the development and implementation of a Sickle Cell Counselor Training and Certification Program. We employed qualitative methods to understand cultural, religious and psychosocial dimensions of SCD and SCT, including the advisors’ attitudes and beliefs in relation to developing a culturally sensitive approach to family education and counseling that is maximally suited to diverse communities in Ghana. We collated advisors’ discussions and observations in order to understand community issues, potential challenges, and guide strategies for advocacy in SCD family education and counseling. Results from the workshop revealed that community leaders representing diverse communities in Ghana were engaged constructively in discussions about developing a culturally sensitive counselor training program. Key findings included the importance of improved knowledge about SCD among the public and youth in particular, the value of stakeholders such as elders, religious and traditional leaders, and government expectations of reduced SCD births. We submitted a report to the Ministry of Health in Ghana with recommendations for the next steps in developing a national sickle cell counselor training program. We named the program ‘Genetic Education and Counseling for Sickle Cell Conditions in Ghana’ (GENECIS-Ghana). The first GENECIS-Ghana Training and Certification Program Workshop was conducted from June 8th to 12th, 2015.

Journal article

Mulder N, Nembaware V, Adekile A, Anie KA, Inusa B, Brown B, Campbell A, Chinenere F, Chunda-Liyoka C, Derebail VK, Geard A, Ghedira K, Hamilton CM, Hanchard NA, Haendel M, Huggins W, Ibrahim M, Jupp S, Kamga KK, Knight-Madden J, Lopez-Sall P, Mbiyavanga M, Munube D, Nirenberg D, Nnodu O, Ofori-Acquah SF, Ohene-Frempong K, Opap KB, Panji S, Park M, Pule G, Royal C, Sangeda R, Tayo B, Treadwell M, Tshilolo L, Wonkam Aet al., 2016, Proceedings of a Sickle Cell Disease Ontology workshop - Towards the first comprehensive ontology for Sickle Cell Disease, Applied and Translational Genomics, Vol: 9, Pages: 23-29, ISSN: 2212-0661

Sickle cell disease (SCD) is a debilitating single gene disorder caused by a single point mutation that results in physical deformation (i.e. sickling) of erythrocytes at reduced oxygen tensions. Up to 75% of SCD in newborns world-wide occurs in sub-Saharan Africa, where neonatal and childhood mortality from sickle cell related complications is high. While SCD research across the globe is tackling the disease on multiple fronts, advances have yet to significantly impact on the health and quality of life of SCD patients, due to lack of coordination of these disparate efforts. Ensuring data across studies is directly comparable through standardization is a necessary step towards realizing this goal. Such a standardization requires the development and implementation of a disease-specific ontology for SCD that is applicable globally. Ontology development is best achieved by bringing together experts in the domain to contribute their knowledge. The SCD community and H3ABioNet members joined forces at a recent SCD Ontology workshop to develop an ontology covering aspects of SCD under the classes: phenotype, diagnostics, therapeutics, quality of life, disease modifiers and disease stage. The aim of the workshop was for participants to contribute their expertise to development of the structure and contents of the SCD ontology. Here we describe the proceedings of the Sickle Cell Disease Ontology Workshop held in Cape Town South Africa in February 2016 and its outcomes. The objective of the workshop was to bring together experts in SCD from around the world to contribute their expertise to the development of various aspects of the SCD ontology.

Journal article

Aikins AD-G, Sanuade OA, Anie KA, 2016, Ageing and Neurodegenerative Diseases in Low- and Middle-income Countries, CHRONIC NON-COMMUNICABLE DISEASES IN LOW- AND MIDDLE-INCOME COUNTRIES, Editors: Aikins, Agyemang, Publisher: CABI PUBLISHING-C A B INT, Pages: 50-68

Book chapter

Treadwell MJ, Anie KA, Grant AM, Ofori-Acquah SF, Ohene-Frempong Ket al., 2015, Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana, JOURNAL OF GENETIC COUNSELING, Vol: 24, Pages: 267-277, ISSN: 1059-7700

Journal article

Anie KA, Green J, 2015, Psychological therapies for sickle cell disease and pain, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X

Journal article

Anie KA, Massaglia P, 2014, Psychological therapies for thalassaemia, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X

Journal article

Cabrita IZ, Mohammed A, Layton M, Ghorashian S, Gilmore A, Cho G, Howard J, Anie KA, Desforges L, Bassett P, Grapsa J, Howard L, Mahalingam G, Dawson D, Pinto FJ, Nihoyannopoulos P, Davies SC, Gibbs JSRet al., 2013, The association between tricuspid regurgitation velocity and 5-year survival in a North West London population of patients with sickle cell disease in the United Kingdom, BRITISH JOURNAL OF HAEMATOLOGY, Vol: 162, Pages: 400-408, ISSN: 0007-1048

Journal article

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