From biobank and data silos into a data commons: convergence to support translational medicine

Abstract Background To drive translational medicine, modern day biobanks need to integrate with other sources of data (clinical, genomics) to support novel data-intensive research. Currently, vast amounts of research and clinical data remain in silos, held and managed by individual researchers, oper...

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Autores principales:	Rebecca Asiimwe, Stephanie Lam, Samuel Leung, Shanzhao Wang, Rachel Wan, Anna Tinker, Jessica N. McAlpine, Michelle M. M. Woo, David G. Huntsman, Aline Talhouk
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Biobanks Biospecimens Biobank-technologies Precision medicine Data commons Laboratory Information Management Systems (LIMS) Medicine R
Acceso en línea:	https://doaj.org/article/96e015caa4834c0f93e69eeba2ba57ff
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spelling	oai:doaj.org-article:96e015caa4834c0f93e69eeba2ba57ff2021-12-05T12:06:00ZFrom biobank and data silos into a data commons: convergence to support translational medicine10.1186/s12967-021-03147-z1479-5876https://doaj.org/article/96e015caa4834c0f93e69eeba2ba57ff2021-12-01T00:00:00Zhttps://doi.org/10.1186/s12967-021-03147-zhttps://doaj.org/toc/1479-5876Abstract Background To drive translational medicine, modern day biobanks need to integrate with other sources of data (clinical, genomics) to support novel data-intensive research. Currently, vast amounts of research and clinical data remain in silos, held and managed by individual researchers, operating under different standards and governance structures; a framework that impedes sharing and effective use of data. In this article, we describe the journey of British Columbia’s Gynecological Cancer Research Program (OVCARE) in moving a traditional tumour biobank, outcomes unit, and a collection of data silos, into an integrated data commons to support data standardization and resource sharing under collaborative governance, as a means of providing the gynecologic cancer research community in British Columbia access to tissue samples and associated clinical and molecular data from thousands of patients. Results Through several engagements with stakeholders from various research institutions within our research community, we identified priorities and assessed infrastructure needs required to optimize and support data collections, storage and sharing, under three main research domains: (1) biospecimen collections, (2) molecular and genomics data, and (3) clinical data. We further built a governance model and a resource portal to implement protocols and standard operating procedures for seamless collections, management and governance of interoperable data, making genomic, and clinical data available to the broader research community. Conclusions Proper infrastructures for data collection, sharing and governance is a translational research imperative. We have consolidated our data holdings into a data commons, along with standardized operating procedures to meet research and ethics requirements of the gynecologic cancer community in British Columbia. The developed infrastructure brings together, diverse data, computing frameworks, as well as tools and applications for managing, analyzing, and sharing data. Our data commons bridges data access gaps and barriers to precision medicine and approaches for diagnostics, treatment and prevention of gynecological cancers, by providing access to large datasets required for data-intensive science.Rebecca AsiimweStephanie LamSamuel LeungShanzhao WangRachel WanAnna TinkerJessica N. McAlpineMichelle M. M. WooDavid G. HuntsmanAline TalhoukBMCarticleBiobanksBiospecimensBiobank-technologiesPrecision medicineData commonsLaboratory Information Management Systems (LIMS)MedicineRENJournal of Translational Medicine, Vol 19, Iss 1, Pp 1-13 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Biobanks Biospecimens Biobank-technologies Precision medicine Data commons Laboratory Information Management Systems (LIMS) Medicine R
spellingShingle	Biobanks Biospecimens Biobank-technologies Precision medicine Data commons Laboratory Information Management Systems (LIMS) Medicine R Rebecca Asiimwe Stephanie Lam Samuel Leung Shanzhao Wang Rachel Wan Anna Tinker Jessica N. McAlpine Michelle M. M. Woo David G. Huntsman Aline Talhouk From biobank and data silos into a data commons: convergence to support translational medicine
description	Abstract Background To drive translational medicine, modern day biobanks need to integrate with other sources of data (clinical, genomics) to support novel data-intensive research. Currently, vast amounts of research and clinical data remain in silos, held and managed by individual researchers, operating under different standards and governance structures; a framework that impedes sharing and effective use of data. In this article, we describe the journey of British Columbia’s Gynecological Cancer Research Program (OVCARE) in moving a traditional tumour biobank, outcomes unit, and a collection of data silos, into an integrated data commons to support data standardization and resource sharing under collaborative governance, as a means of providing the gynecologic cancer research community in British Columbia access to tissue samples and associated clinical and molecular data from thousands of patients. Results Through several engagements with stakeholders from various research institutions within our research community, we identified priorities and assessed infrastructure needs required to optimize and support data collections, storage and sharing, under three main research domains: (1) biospecimen collections, (2) molecular and genomics data, and (3) clinical data. We further built a governance model and a resource portal to implement protocols and standard operating procedures for seamless collections, management and governance of interoperable data, making genomic, and clinical data available to the broader research community. Conclusions Proper infrastructures for data collection, sharing and governance is a translational research imperative. We have consolidated our data holdings into a data commons, along with standardized operating procedures to meet research and ethics requirements of the gynecologic cancer community in British Columbia. The developed infrastructure brings together, diverse data, computing frameworks, as well as tools and applications for managing, analyzing, and sharing data. Our data commons bridges data access gaps and barriers to precision medicine and approaches for diagnostics, treatment and prevention of gynecological cancers, by providing access to large datasets required for data-intensive science.
format	article
author	Rebecca Asiimwe Stephanie Lam Samuel Leung Shanzhao Wang Rachel Wan Anna Tinker Jessica N. McAlpine Michelle M. M. Woo David G. Huntsman Aline Talhouk
author_facet	Rebecca Asiimwe Stephanie Lam Samuel Leung Shanzhao Wang Rachel Wan Anna Tinker Jessica N. McAlpine Michelle M. M. Woo David G. Huntsman Aline Talhouk
author_sort	Rebecca Asiimwe
title	From biobank and data silos into a data commons: convergence to support translational medicine
title_short	From biobank and data silos into a data commons: convergence to support translational medicine
title_full	From biobank and data silos into a data commons: convergence to support translational medicine
title_fullStr	From biobank and data silos into a data commons: convergence to support translational medicine
title_full_unstemmed	From biobank and data silos into a data commons: convergence to support translational medicine
title_sort	from biobank and data silos into a data commons: convergence to support translational medicine
publisher	BMC
publishDate	2021
url	https://doaj.org/article/96e015caa4834c0f93e69eeba2ba57ff
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From biobank and data silos into a data commons: convergence to support translational medicine

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