Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved]
The Infectious Diseases Data Observatory (IDDO, https://www.iddo.org) has launched a clinical data platform for the collation, curation, standardisation and reuse of individual participant data (IPD) on treatments for two of the most globally important neglected tropical diseases (NTDs), schistosomi...
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| Format: | Article |
| Language: | English |
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Wellcome
2022-01-01
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| Series: | Wellcome Open Research |
| Subjects: | |
| Online Access: | https://wellcomeopenresearch.org/articles/7-5/v1 |
| _version_ | 1818204409403801600 |
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| author | Charles H. King Philippe J. Guérin Jennifer Keiser Yvonne Ai-Lian Lim Bruno Levecke Doudou Sow Otavio Pieri Joanne P. Webster J. Russell Stothard Robert F. Terry Xiao-Nong Zhou Maria-Gloria Basáñez Matthew Brack Martin Walker Julia B. Halder Luzia T. Freitas |
| author_facet | Charles H. King Philippe J. Guérin Jennifer Keiser Yvonne Ai-Lian Lim Bruno Levecke Doudou Sow Otavio Pieri Joanne P. Webster J. Russell Stothard Robert F. Terry Xiao-Nong Zhou Maria-Gloria Basáñez Matthew Brack Martin Walker Julia B. Halder Luzia T. Freitas |
| author_sort | Charles H. King |
| collection | DOAJ |
| description | The Infectious Diseases Data Observatory (IDDO, https://www.iddo.org) has launched a clinical data platform for the collation, curation, standardisation and reuse of individual participant data (IPD) on treatments for two of the most globally important neglected tropical diseases (NTDs), schistosomiasis (SCH) and soil-transmitted helminthiases (STHs). This initiative aims to harness the power of data-sharing by facilitating collaborative joint analyses of pooled datasets to generate robust evidence on the efficacy and safety of anthelminthic treatment regimens. A crucial component of this endeavour has been the development of a Research Agenda to promote engagement with the SCH and STH research and disease control communities by highlighting key questions that could be tackled using data shared through the IDDO platform. Here, we give a contextual overview of the priority research themes articulated in the Research Agenda—a ‘living’ document hosted on the IDDO website—and describe the three-stage consultation process behind its development. We also discuss the sustainability and future directions of the platform, emphasising throughout the power and promise of ethical and equitable sharing and reuse of clinical data to support the elimination of NTDs. |
| first_indexed | 2024-12-12T03:40:47Z |
| format | Article |
| id | doaj.art-7449646b02824d65882132762dd502d5 |
| institution | Directory Open Access Journal |
| issn | 2398-502X |
| language | English |
| last_indexed | 2024-12-12T03:40:47Z |
| publishDate | 2022-01-01 |
| publisher | Wellcome |
| record_format | Article |
| series | Wellcome Open Research |
| spelling | doaj.art-7449646b02824d65882132762dd502d52022-12-22T00:39:42ZengWellcomeWellcome Open Research2398-502X2022-01-01719316Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved]Charles H. King0Philippe J. Guérin1https://orcid.org/0000-0002-6008-2963Jennifer Keiser2Yvonne Ai-Lian Lim3Bruno Levecke4Doudou Sow5Otavio Pieri6Joanne P. Webster7J. Russell Stothard8Robert F. Terry9https://orcid.org/0000-0003-3849-7705Xiao-Nong Zhou10Maria-Gloria Basáñez11Matthew Brack12https://orcid.org/0000-0001-7653-7371Martin Walker13https://orcid.org/0000-0001-8714-5365Julia B. Halder14Luzia T. Freitas15Center for Global Health and Diseases, Case Western Reserve University, Cleveland, Ohio, USAInfectious Diseases Data Observatory, University of Oxford, Oxford, UKSwiss Tropical and Public Health Institute, Basel, SwitzerlandDepartment of Parasitology, University of Malaya, Kuala Lumpur, MalaysiaDepartment of Translational Physiology, Ghent University, Merelbeke, BelgiumService de Parasitologie, Université Gaston Berger de Saint Louis, Saint Louis, SenegalLaboratory of Health and Environment Education, Oswaldo Cruz Institute, Fiocruz, Rio de Janiero, BrazilDepartment of Pathobiology and Population Sciences, Royal Veterinary College, London, Hatfield, UKDepartment of Tropical Disease Biology, Liverpool School of Tropical Medicine, Liverpool, UKSpecial Programme for Research and Training in Tropical Diseases (TDR), World Health Organization, Geneva, SwitzerlandNational Institute of Parasitic Diseases, China Center for Disease Control and Prevention, Shanghai, ChinaDepartment of Infectious Disease Epidemiology, MRC Centre for Global Infectious Disease Analysis and London Centre for Neglected Tropical Disease Research, Imperial College London, London, UKInfectious Diseases Data Observatory, University of Oxford, Oxford, UKDepartment of Pathobiology and Population Sciences, Royal Veterinary College, London, Hatfield, UKDepartment of Pathobiology and Population Sciences, Royal Veterinary College, London, Hatfield, UKDepartment of Pathobiology and Population Sciences, Royal Veterinary College, London, Hatfield, UKThe Infectious Diseases Data Observatory (IDDO, https://www.iddo.org) has launched a clinical data platform for the collation, curation, standardisation and reuse of individual participant data (IPD) on treatments for two of the most globally important neglected tropical diseases (NTDs), schistosomiasis (SCH) and soil-transmitted helminthiases (STHs). This initiative aims to harness the power of data-sharing by facilitating collaborative joint analyses of pooled datasets to generate robust evidence on the efficacy and safety of anthelminthic treatment regimens. A crucial component of this endeavour has been the development of a Research Agenda to promote engagement with the SCH and STH research and disease control communities by highlighting key questions that could be tackled using data shared through the IDDO platform. Here, we give a contextual overview of the priority research themes articulated in the Research Agenda—a ‘living’ document hosted on the IDDO website—and describe the three-stage consultation process behind its development. We also discuss the sustainability and future directions of the platform, emphasising throughout the power and promise of ethical and equitable sharing and reuse of clinical data to support the elimination of NTDs.https://wellcomeopenresearch.org/articles/7-5/v1schistosomiasis soil-transmitted helminthiasis data sharing data reuse treatment anthelminticeng |
| spellingShingle | Charles H. King Philippe J. Guérin Jennifer Keiser Yvonne Ai-Lian Lim Bruno Levecke Doudou Sow Otavio Pieri Joanne P. Webster J. Russell Stothard Robert F. Terry Xiao-Nong Zhou Maria-Gloria Basáñez Matthew Brack Martin Walker Julia B. Halder Luzia T. Freitas Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] Wellcome Open Research schistosomiasis soil-transmitted helminthiasis data sharing data reuse treatment anthelmintic eng |
| title | Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] |
| title_full | Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] |
| title_fullStr | Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] |
| title_full_unstemmed | Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] |
| title_short | Improving anthelmintic treatment for schistosomiasis and soil-transmitted helminthiases through sharing and reuse of individual participant data [version 1; peer review: 2 approved] |
| title_sort | improving anthelmintic treatment for schistosomiasis and soil transmitted helminthiases through sharing and reuse of individual participant data version 1 peer review 2 approved |
| topic | schistosomiasis soil-transmitted helminthiasis data sharing data reuse treatment anthelmintic eng |
| url | https://wellcomeopenresearch.org/articles/7-5/v1 |
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