Pub Date : 2024-07-15DOI: 10.12688/wellcomeopenres.22645.1
Ed J. Griffen, Pascale Boulet
The COVID-19 pandemic demonstrated that the current purely market-driven approaches to drug discovery and development alone are insufficient to drive equitable access to new therapies either in preparation for, or in response to, pandemics. A new global framework driven by equity is under negotiation at the World Health Organization to support pandemic preparedness and response. Some believe that the global intellectual property (IP) system itself is part of the problem and propose a purely Open Science approach. In this article, we discuss how existing IP frameworks and contractual agreements may be used to create rights and obligations to generate a more effective global response in future, drawing on experience gained in the COVID Moonshot program, a purely Open Science collaboration, and the ASAP AViDD drug discovery consortium, which uses a hybrid, phased model of Open Science, patent filing and contractual agreements. We conclude that ‘straight to generic’ drug discovery is appropriate in some domains, and that targeted patent protection, coupled with open licensing, can offer a route to generating affordable and equitable access for therapy areas where market forces have failed. The Extended Data contains a copy of our model IP policy, which can be used as a template by other discovery efforts seeking to ensure their drug candidates can be developed for globally equitable and affordable access.
{"title":"Enabling equitable and affordable access to novel therapeutics for pandemic preparedness and response via creative intellectual property agreements","authors":"Ed J. Griffen, Pascale Boulet","doi":"10.12688/wellcomeopenres.22645.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22645.1","url":null,"abstract":"The COVID-19 pandemic demonstrated that the current purely market-driven approaches to drug discovery and development alone are insufficient to drive equitable access to new therapies either in preparation for, or in response to, pandemics. A new global framework driven by equity is under negotiation at the World Health Organization to support pandemic preparedness and response. Some believe that the global intellectual property (IP) system itself is part of the problem and propose a purely Open Science approach. In this article, we discuss how existing IP frameworks and contractual agreements may be used to create rights and obligations to generate a more effective global response in future, drawing on experience gained in the COVID Moonshot program, a purely Open Science collaboration, and the ASAP AViDD drug discovery consortium, which uses a hybrid, phased model of Open Science, patent filing and contractual agreements. We conclude that ‘straight to generic’ drug discovery is appropriate in some domains, and that targeted patent protection, coupled with open licensing, can offer a route to generating affordable and equitable access for therapy areas where market forces have failed. The Extended Data contains a copy of our model IP policy, which can be used as a template by other discovery efforts seeking to ensure their drug candidates can be developed for globally equitable and affordable access.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"14 15","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141645784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22579.1
Richard Pitman, Bernd Hänfling
We present a genome assembly from an individual Squalius cephalus (the European chub; Chordata; Actinopteri; Cypriniformes; Cyprinidae). The genome sequence is 1,101.9 megabases in span. Most of the assembly is scaffolded into 25 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 16.61 kilobases in length.
{"title":"The genome sequence of the European chub, Squalius cephalus (Linnaeus, 1758)","authors":"Richard Pitman, Bernd Hänfling","doi":"10.12688/wellcomeopenres.22579.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22579.1","url":null,"abstract":"We present a genome assembly from an individual Squalius cephalus (the European chub; Chordata; Actinopteri; Cypriniformes; Cyprinidae). The genome sequence is 1,101.9 megabases in span. Most of the assembly is scaffolded into 25 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 16.61 kilobases in length.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"25 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141658900","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22586.1
Liam M. Crowley, Denise C. Wawman
We present a genome assembly from an individual male Pyrrhosoma nymphula (the Large Red Damselfly; Arthropoda; Insecta; Odonata; Coenagrionidae). The genome sequence is 2,117.2 megabases in span. Most of the assembly is scaffolded into 14 chromosomal pseudomolecules, including the X sex chromosome. The mitochondrial genome has also been assembled and is 16.78 kilobases in length.
{"title":"The genome sequence of the Large Red Damselfly Pyrrhosoma nymphula (Sulzer, 1776)","authors":"Liam M. Crowley, Denise C. Wawman","doi":"10.12688/wellcomeopenres.22586.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22586.1","url":null,"abstract":"We present a genome assembly from an individual male Pyrrhosoma nymphula (the Large Red Damselfly; Arthropoda; Insecta; Odonata; Coenagrionidae). The genome sequence is 2,117.2 megabases in span. Most of the assembly is scaffolded into 14 chromosomal pseudomolecules, including the X sex chromosome. The mitochondrial genome has also been assembled and is 16.78 kilobases in length.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"30 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141659465","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22585.1
Ruiqi Li, Jingchun Li, Sarah Lemer, J. V. Lopez, Graeme Oatley, Elizabeth Sinclair, Isabelle Ailish Clayton-Lucey, E. Aunin, Noah Gettle, Camilla Santos, Michael Paulini, Haoyu Niu, Victoria McKenna, Rebecca O’Brien
We present a genome assembly from an individual Fragum sueziense (the heart cockle; Mollusca; Bivalvia; Cardiida; Cardiidae). The genome sequence is 1,206.1 megabases in span. Most of the assembly is scaffolded into 19 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 92.77 kilobases in length. Gene annotation of this assembly on Ensembl identified 70,309 protein-coding genes.
{"title":"The genome sequence of the heart cockle, Fragum sueziense (Issel, 1869)","authors":"Ruiqi Li, Jingchun Li, Sarah Lemer, J. V. Lopez, Graeme Oatley, Elizabeth Sinclair, Isabelle Ailish Clayton-Lucey, E. Aunin, Noah Gettle, Camilla Santos, Michael Paulini, Haoyu Niu, Victoria McKenna, Rebecca O’Brien","doi":"10.12688/wellcomeopenres.22585.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22585.1","url":null,"abstract":"We present a genome assembly from an individual Fragum sueziense (the heart cockle; Mollusca; Bivalvia; Cardiida; Cardiidae). The genome sequence is 1,206.1 megabases in span. Most of the assembly is scaffolded into 19 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 92.77 kilobases in length. Gene annotation of this assembly on Ensembl identified 70,309 protein-coding genes.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"13 24","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141660286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22584.1
Darren J. Obbard
We present a genome assembly from an individual male Drosophila limbata (drosophilid fruit fly; Arthropoda; Insecta; Diptera; Drosophilidae). The genome sequence is 233.5 megabases in span. Most of the assembly is scaffolded into 6 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 16.09 kilobases in length.
{"title":"The genome sequence of a drosophilid fruit fly, Drosophila limbata von Roser 1840","authors":"Darren J. Obbard","doi":"10.12688/wellcomeopenres.22584.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22584.1","url":null,"abstract":"We present a genome assembly from an individual male Drosophila limbata (drosophilid fruit fly; Arthropoda; Insecta; Diptera; Drosophilidae). The genome sequence is 233.5 megabases in span. Most of the assembly is scaffolded into 6 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 16.09 kilobases in length.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"19 18","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141661506","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.19959.1
Ine Alvarez van Tussenbroek, M. Knörnschild, M. Nagy, Brian P. O'Toole, G. Formenti, Philip Philge, Ning Zhang, Linelle Abueg, Nadolina Brajuka, Erich Jarvis, Thomas L. Volkert, Jonathan L. Gray, M. Pieri, Meike Mai, E. Teeling, Sonja C. Vernes
We present a reference genome assembly from an individual male Rhynchonycteris naso (Chordata; Mammalia; Chiroptera; Emballonuridae). The genome sequence is 2.46 Gb in span. The majority of the assembly is scaffolded into 22 chromosomal pseudomolecules, with the Y sex chromosome assembled.
我们展示了来自一只雄性 Rhynchonycteris naso（脊索动物门；哺乳纲；脊索动物；Emballonuridae）个体的参考基因组序列。该基因组序列的跨度为 2.46 Gb。该基因组的大部分序列被组装成 22 个染色体假分子，其中 Y 性染色体已组装完成。
{"title":"The genome sequence of Rhynchonycteris naso, Peters, 1867 (Chiroptera, Emballonuridae, Rhynchonycteris)","authors":"Ine Alvarez van Tussenbroek, M. Knörnschild, M. Nagy, Brian P. O'Toole, G. Formenti, Philip Philge, Ning Zhang, Linelle Abueg, Nadolina Brajuka, Erich Jarvis, Thomas L. Volkert, Jonathan L. Gray, M. Pieri, Meike Mai, E. Teeling, Sonja C. Vernes","doi":"10.12688/wellcomeopenres.19959.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.19959.1","url":null,"abstract":"We present a reference genome assembly from an individual male Rhynchonycteris naso (Chordata; Mammalia; Chiroptera; Emballonuridae). The genome sequence is 2.46 Gb in span. The majority of the assembly is scaffolded into 22 chromosomal pseudomolecules, with the Y sex chromosome assembled.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"26 21","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141660772","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22508.1
J. de Vries
Silences exist in global health ethics scholarship because of the particular caricatures of Africa that abound in the world, and these silences profoundly impact scholarship in this field. In this paper, I outline three such silences. The first concerns the consequences of representations of Africa as a place of theoretical scarcity, where the only theory seemingly worth mentioning is relational ontology. The second issue I highlight is the impact of dehumanization on global health and ethics. The third concerns the expectation that African science should serve the goal of development, which limits not only the scientific imagination but also the range of ethical questions that are engaged with. Finally, I turn to Francis Nyamnjoh’s theory of incompleteness and conviviality to propose a shift in bioethics scholarship towards increased focus on the interconnections, encounters and mutual dependency of people and places elsewhere. Incompleteness requires epistemic humility and a curiosity about the views and experiences of others; conviviality is the predisposition required to allow for meaningful exchanges and mutual learning in global health ethics. As a theoretical framework, incompleteness and conviviality are part of a rich African intellectual tradition to help articulate opportunities for a transformative research agenda that helps us understand our world, and its crises, better.
{"title":"Centering Africa as context and driver for Global Health Ethics: incompleteness, conviviality and the limits of Ubuntu","authors":"J. de Vries","doi":"10.12688/wellcomeopenres.22508.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22508.1","url":null,"abstract":"Silences exist in global health ethics scholarship because of the particular caricatures of Africa that abound in the world, and these silences profoundly impact scholarship in this field. In this paper, I outline three such silences. The first concerns the consequences of representations of Africa as a place of theoretical scarcity, where the only theory seemingly worth mentioning is relational ontology. The second issue I highlight is the impact of dehumanization on global health and ethics. The third concerns the expectation that African science should serve the goal of development, which limits not only the scientific imagination but also the range of ethical questions that are engaged with. Finally, I turn to Francis Nyamnjoh’s theory of incompleteness and conviviality to propose a shift in bioethics scholarship towards increased focus on the interconnections, encounters and mutual dependency of people and places elsewhere. Incompleteness requires epistemic humility and a curiosity about the views and experiences of others; conviviality is the predisposition required to allow for meaningful exchanges and mutual learning in global health ethics. As a theoretical framework, incompleteness and conviviality are part of a rich African intellectual tradition to help articulate opportunities for a transformative research agenda that helps us understand our world, and its crises, better.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"38 26","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141660464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22481.1
D. Riddell, J. Hildyard, R. Harron, Dominic J. Wells, R. Piercy
Background Duchenne muscular dystrophy (DMD) is a fatal muscle wasting disease caused by mutations in the dystrophin gene. DE50-MD dogs are a canine model of DMD used as final translational models for evaluation of promising treatments. MicroRNA (miR) expressions in the muscle of DE50-MD dogs represent potential biomarkers, but stable reference miRs must first be identified. The aim of this paper was to establish a panel of reference miRs for WT and DE50-MD dogs over a range of ages and muscle groups. Methods RNA was extracted from WT and DE50-MD dog (N=6 per genotype) vastus lateralis muscle samples collected longitudinally at 3, 6, 9, 12, 15 and 18 months of age, and from muscles collected post-mortem (N=3 per genotype; cranial tibial, semimembranosus, lateral triceps and diaphragm). 87 RNAs were quantified in a subset of 6-month-old WT and DE50-MD muscles (N=4 per genotype) using the QIAcuity miFinder panel. GeNorm, BestKeeper and Normfinder were used to identify a candidate panel of the 8 most stable small RNAs, which were then quantified in all RNA samples, alongside the commonly used reference RNA snRNA U6. Results The most stable miRs of this subset were used to normalise quantities of dystromiRs miR-1, miR-133a and miR-206, and fibromiR miR-214. MicroRNAs miR-191, let-7b, miR-125a and miR-15a were the most stable miRs tested, while snRNA U6 performed poorly. DystromiR expression, normalised to the geometric mean of the panel of reference miRs, was lower for miR-1 and miR-133a in DE50-MD compared to WT muscles, while miR-206 levels did not significantly differ between genotypes. FibromiR miR-214 was 2- to 4-fold higher in DE50-MD versus WT muscles. Conclusions A normalisation factor derived from miR-191, let-7b, miR-125a and miR-15a is suitable for normalising miR expression data from WT and DE50-MD muscle over a range of ages and muscle types.
{"title":"Identification of reference microRNAs in skeletal muscle of a canine model of Duchenne muscular dystrophy","authors":"D. Riddell, J. Hildyard, R. Harron, Dominic J. Wells, R. Piercy","doi":"10.12688/wellcomeopenres.22481.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22481.1","url":null,"abstract":"Background Duchenne muscular dystrophy (DMD) is a fatal muscle wasting disease caused by mutations in the dystrophin gene. DE50-MD dogs are a canine model of DMD used as final translational models for evaluation of promising treatments. MicroRNA (miR) expressions in the muscle of DE50-MD dogs represent potential biomarkers, but stable reference miRs must first be identified. The aim of this paper was to establish a panel of reference miRs for WT and DE50-MD dogs over a range of ages and muscle groups. Methods RNA was extracted from WT and DE50-MD dog (N=6 per genotype) vastus lateralis muscle samples collected longitudinally at 3, 6, 9, 12, 15 and 18 months of age, and from muscles collected post-mortem (N=3 per genotype; cranial tibial, semimembranosus, lateral triceps and diaphragm). 87 RNAs were quantified in a subset of 6-month-old WT and DE50-MD muscles (N=4 per genotype) using the QIAcuity miFinder panel. GeNorm, BestKeeper and Normfinder were used to identify a candidate panel of the 8 most stable small RNAs, which were then quantified in all RNA samples, alongside the commonly used reference RNA snRNA U6. Results The most stable miRs of this subset were used to normalise quantities of dystromiRs miR-1, miR-133a and miR-206, and fibromiR miR-214. MicroRNAs miR-191, let-7b, miR-125a and miR-15a were the most stable miRs tested, while snRNA U6 performed poorly. DystromiR expression, normalised to the geometric mean of the panel of reference miRs, was lower for miR-1 and miR-133a in DE50-MD compared to WT muscles, while miR-206 levels did not significantly differ between genotypes. FibromiR miR-214 was 2- to 4-fold higher in DE50-MD versus WT muscles. Conclusions A normalisation factor derived from miR-191, let-7b, miR-125a and miR-15a is suitable for normalising miR expression data from WT and DE50-MD muscle over a range of ages and muscle types.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"28 19","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141662447","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22610.1
David C. Lees
We present a genome assembly from an individual male Lithophane leautieri (Blair’s Shoulder-knot; Arthropoda; Insecta; Lepidoptera; Noctuidae). The genome sequence is 521.7 megabases in span. Most of the assembly is scaffolded into 31 chromosomal pseudomolecules, including the Z sex chromosome. The mitochondrial genome has also been assembled and is 15.4 kilobases in length. Gene annotation of this assembly on Ensembl identified 12,254 protein coding genes.
{"title":"The genome sequence of Blair’s Shoulder-knot, Lithophane leautieri (Boisduval, 1829)","authors":"David C. Lees","doi":"10.12688/wellcomeopenres.22610.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22610.1","url":null,"abstract":"We present a genome assembly from an individual male Lithophane leautieri (Blair’s Shoulder-knot; Arthropoda; Insecta; Lepidoptera; Noctuidae). The genome sequence is 521.7 megabases in span. Most of the assembly is scaffolded into 31 chromosomal pseudomolecules, including the Z sex chromosome. The mitochondrial genome has also been assembled and is 15.4 kilobases in length. Gene annotation of this assembly on Ensembl identified 12,254 protein coding genes.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"8 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141661529","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-10DOI: 10.12688/wellcomeopenres.22429.1
Rhoda Ndubani, Olimpia Lamberti, Anna Kildemoes, Pytsje T Hoekstra, Jennifer Fitzpatrick, Helen Kelly, B. Vwalika, Bodo S. Randrianasolo, Amy S Sturt, Seke Kayuni, Augustine T Choko, Nkatya Kasese, Eyrun Kjetland, T. Nemungadi, S. Mocumbi, Anna Samson, Elizabeth Ntapara, Anifrid Thomson, Elizabeth Danstan, Chido Dziya Chikwari, K. Martin, Ibrahim Rabiu, Gifty Terkie, David Chaima, Manuel Kasoka, Karoline Joeker, Louise T. S. Arenholt, Peter Leutscher, Russel Stothard, Oliva Rabozakandria, A. Gouvras, Tendai Munthali, Grace Hameja, Paul Kanfwa, Halwindi Hikabasa, H. Ayles, K. Shanaube, A. Bustinduy
Female genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haematobium. Both diseases affect the sexual and reproductive health (SRH) of millions of people globally, especially in sub-Sahara Africa (SSA). Awareness and knowledge of these diseases is largely absent among affected communities and healthcare workers in endemic countries. Accurate burden of FGS and MGS disease estimates, single and combined, are absent, mostly due to the absence of standardized methods for individual or population-based screening and diagnosis. In addition, there are disparities in country-specific FGS and MGS knowledge, research and implementation approaches, and diagnosis and treatment. There are currently no WHO guidelines to inform practice. The BILGENSA (Genital Bilharzia in Southern Africa) Research Network aimed to create a collaborative multidisciplinary network to advance clinical research of FGS and MGS across Southern African endemic countries. The workshop was held in Lusaka, Zambia over two days in November 2022. Over 150 researchers and stakeholders from different schistosomiasis endemic settings attended. Attendees identified challenges and research priorities around FGS and MGS from their respective countries. Key research themes identified across settings included: 1) To increase the knowledge about the local burden of FGS and MGS; 2) To raise awareness among local communities and healthcare workers; 3) To develop effective and scalable guidelines for disease diagnosis and management; 4) To understand the effect of treatment interventions on disease progression, and 5) To integrate FGS and MGS within other existing sexual and reproductive health (SRH) services. In its first meeting, the BILGENSA Network set forth a common research agenda across S. haematobium endemic countries for the control of FGS and MGS.
{"title":"The first BILGENSA Research Network workshop in Zambia: identifying research priorities, challenges and needs in genital bilharzia in Southern Africa","authors":"Rhoda Ndubani, Olimpia Lamberti, Anna Kildemoes, Pytsje T Hoekstra, Jennifer Fitzpatrick, Helen Kelly, B. Vwalika, Bodo S. Randrianasolo, Amy S Sturt, Seke Kayuni, Augustine T Choko, Nkatya Kasese, Eyrun Kjetland, T. Nemungadi, S. Mocumbi, Anna Samson, Elizabeth Ntapara, Anifrid Thomson, Elizabeth Danstan, Chido Dziya Chikwari, K. Martin, Ibrahim Rabiu, Gifty Terkie, David Chaima, Manuel Kasoka, Karoline Joeker, Louise T. S. Arenholt, Peter Leutscher, Russel Stothard, Oliva Rabozakandria, A. Gouvras, Tendai Munthali, Grace Hameja, Paul Kanfwa, Halwindi Hikabasa, H. Ayles, K. Shanaube, A. Bustinduy","doi":"10.12688/wellcomeopenres.22429.1","DOIUrl":"https://doi.org/10.12688/wellcomeopenres.22429.1","url":null,"abstract":"Female genital schistosomiasis (FGS) and male genital schistosomiasis (MGS) are gender-specific manifestations of urogenital schistosomiasis. Morbidity is a consequence of prolonged inflammation in the human genital tract caused by the entrapped eggs of the waterborne parasite, Schistosoma (S.) haematobium. Both diseases affect the sexual and reproductive health (SRH) of millions of people globally, especially in sub-Sahara Africa (SSA). Awareness and knowledge of these diseases is largely absent among affected communities and healthcare workers in endemic countries. Accurate burden of FGS and MGS disease estimates, single and combined, are absent, mostly due to the absence of standardized methods for individual or population-based screening and diagnosis. In addition, there are disparities in country-specific FGS and MGS knowledge, research and implementation approaches, and diagnosis and treatment. There are currently no WHO guidelines to inform practice. The BILGENSA (Genital Bilharzia in Southern Africa) Research Network aimed to create a collaborative multidisciplinary network to advance clinical research of FGS and MGS across Southern African endemic countries. The workshop was held in Lusaka, Zambia over two days in November 2022. Over 150 researchers and stakeholders from different schistosomiasis endemic settings attended. Attendees identified challenges and research priorities around FGS and MGS from their respective countries. Key research themes identified across settings included: 1) To increase the knowledge about the local burden of FGS and MGS; 2) To raise awareness among local communities and healthcare workers; 3) To develop effective and scalable guidelines for disease diagnosis and management; 4) To understand the effect of treatment interventions on disease progression, and 5) To integrate FGS and MGS within other existing sexual and reproductive health (SRH) services. In its first meeting, the BILGENSA Network set forth a common research agenda across S. haematobium endemic countries for the control of FGS and MGS.","PeriodicalId":508490,"journal":{"name":"Wellcome Open Research","volume":"37 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141660656","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：