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Enhancing Reuse of Data and Biological Material in Medical Research: From FAIR to FAIR-Health

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      Abstract

      The known challenge of underutilization of data and biological material from biorepositories as potential resources for medical research has been the focus of discussion for over a decade. Recently developed guidelines for improved data availability and reusability—entitled FAIR Principles (Findability, Accessibility, Interoperability, and Reusability)—are likely to address only parts of the problem. In this article, we argue that biological material and data should be viewed as a unified resource. This approach would facilitate access to complete provenance information, which is a prerequisite for reproducibility and meaningful integration of the data. A unified view also allows for optimization of long-term storage strategies, as demonstrated in the case of biobanks. We propose an extension of the FAIR Principles to include the following additional components: (1) quality aspects related to research reproducibility and meaningful reuse of the data, (2) incentives to stimulate effective enrichment of data sets and biological material collections and its reuse on all levels, and (3) privacy-respecting approaches for working with the human material and data. These FAIR-Health principles should then be applied to both the biological material and data. We also propose the development of common guidelines for cloud architectures, due to the unprecedented growth of volume and breadth of medical data generation, as well as the associated need to process the data efficiently.

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      Drug development: Raise standards for preclinical cancer research.

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        The FAIR Guiding Principles for scientific data management and stewardship

        There is an urgent need to improve the infrastructure supporting the reuse of scholarly data. A diverse set of stakeholders—representing academia, industry, funding agencies, and scholarly publishers—have come together to design and jointly endorse a concise and measureable set of principles that we refer to as the FAIR Data Principles. The intent is that these may act as a guideline for those wishing to enhance the reusability of their data holdings. Distinct from peer initiatives that focus on the human scholar, the FAIR Principles put specific emphasis on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals. This Comment is the first formal publication of the FAIR Principles, and includes the rationale behind them, and some exemplar implementations in the community.
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          A view of cloud computing

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            Author and article information

            Affiliations
            [ 1 ]BBMRI-ERIC , Graz, Austria.
            [ 2 ]Technical University of Munich , Munich, Germany.
            [ 3 ]TMF e.V. , Berlin, Germany.
            [ 4 ]BBMRI.mt and University of Malta , Msida, Malta.
            [ 5 ]BBMRI.it and Universita degli Studi di Milano-Bicocca , Milano, Italy.
            [ 6 ]BBMRI.gr and Foundation for Research and Technology-Hellas , Heraklion, Greece.
            [ 7 ]BBMRI.pl and Wroclaw Research Centre EIT+ , Wroclaw, Poland.
            [ 8 ]BBMRI.pl and University of Łódź , Łódź, Poland.
            [ 9 ]Helmholtz Zentrum München , Munich, Germany.
            [ 10 ]BBMRI.it and CRS4 , Pula, Italy.
            [ 11 ]BBMRI.tr and Acibadem University , Istanbul, Turkey.
            [ 12 ]BBMRI.IARC and International Agency for Research on Cancer , Lyon, France.
            [ 13 ]BBMRI.cz and Masaryk Memorial Cancer Institute , Brno, Czech Republic.
            [ 14 ]INSERM , Paris, France.
            [ 15 ]BBMRI.at and Medical University Graz , Graz, Austria.
            [ 16 ]BBMRI.nl and Leiden University Medical Center , Leiden, Netherlands.
            Author notes
            Address correspondence to: Petr Holub, PhD, BBMRI-ERIC Neue Stiftingtalstraße 2/B/6, Graz 8010, Austria

            E-mail: petr.holub@ 123456bbmri-eric.eu
            Journal
            Biopreserv Biobank
            Biopreserv Biobank
            bio
            Biopreservation and Biobanking
            Mary Ann Liebert, Inc. (140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA )
            1947-5535
            1947-5543
            01 April 2018
            01 April 2018
            01 April 2018
            : 16
            : 2
            : 97-105
            29359962
            5906729
            10.1089/bio.2017.0110
            10.1089/bio.2017.0110
            © Petr Holub et al., 2018; Published by Mary Ann Liebert, Inc.

            This Open Access article is distributed under the terms of the Creative Commons License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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            Figures: 6, References: 49, Pages: 9
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