17
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      The Informatics Challenges Facing Biobanks: A Perspective from a United Kingdom Biobanking Network

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          The challenges facing biobanks are changing from simple collections of materials to quality-assured fit-for-purpose clinically annotated samples. As a result, informatics awareness and capabilities of a biobank are now intrinsically related to quality. A biobank may be considered a data repository, in the form of raw data (the unprocessed samples), data surrounding the samples (processing and storage conditions), supplementary data (such as clinical annotations), and an increasing ethical requirement for biobanks to have a mechanism for researchers to return their data. The informatics capabilities of a biobank are no longer simply knowing sample locations; instead the capabilities will become a distinguishing factor in the ability of a biobank to provide appropriate samples. There is an increasing requirement for biobanking systems (whether in-house or commercially sourced) to ensure the informatics systems stay apace with the changes being experienced by the biobanking community. In turn, there is a requirement for the biobanks to have a clear informatics policy and directive that is embedded into the wider decision making process. As an example, the Breast Cancer Campaign Tissue Bank in the UK was a collaboration between four individual and diverse biobanks in the UK, and an informatics platform has been developed to address the challenges of running a distributed network. From developing such a system there are key observations about what can or cannot be achieved by informatics in isolation. This article will highlight some of the lessons learned during this development process.

          Related collections

          Most cited references9

          • Record: found
          • Abstract: found
          • Article: not found

          REporting recommendations for tumour MARKer prognostic studies (REMARK).

          Despite years of research and hundreds of reports on tumour markers in oncology, the number of markers that have emerged as clinically useful is pitifully small. Often initially reported studies of a marker show great promise, but subsequent studies on the same or related markers yield inconsistent conclusions or stand in direct contradiction to the promising results. It is imperative that we attempt to understand the reasons that multiple studies of the same marker lead to differing conclusions. A variety of methodologic problems have been cited to explain these discrepancies. Unfortunately, many tumour marker studies have not been reported in a rigorous fashion, and published articles often lack sufficient information to allow adequate assessment of the quality of the study or the generalisability of study results. The development of guidelines for the reporting of tumour marker studies was a major recommendation of the National Cancer Institute-European Organisation for Research and Treatment of Cancer (NCI-EORTC) First International Meeting on Cancer Diagnostics in 2000. As for the successful CONSORT initiative for randomised trials and for the STARD statement for diagnostic studies, we suggest guidelines to provide relevant information about the study design, pre-planned hypotheses, patient and specimen characteristics, assay methods, and statistical analysis methods. In addition, the guidelines suggest helpful presentations of data and important elements to include in discussions. The goal of these guidelines is to encourage transparent and complete reporting so that the relevant information will be available to others to help them to judge the usefulness of the data and understand the context in which the conclusions apply.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Biobanking for Europe.

            Biobanks are well-organized resources comprising biological samples and associated information that are accessible to scientific investigation. Across Europe, millions of samples with related data are held in different types of collections. While individual collections can be well organized and accessible, the resources are subject to fragmentation, insecurity of funding and incompleteness. To address these issues, a Biobanking and BioMolecular Resources Infrastructure (BBMRI) is to be developed across Europe, thereby implementing a European 'roadmap' for research infrastructures that was developed by a forum of EU member states and that has been received by the European Commission. In this review, we describe the work involved in preparing for the construction of BBMRI in a European and global context.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              2012 best practices for repositories collection, storage, retrieval, and distribution of biological materials for research international society for biological and environmental repositories.

              (2012)
              Third Edition [Formula: see text] [Box: see text] Printed with permission from the International Society for Biological and Environmental Repositories (ISBER) © 2011 ISBER All Rights Reserved Editor-in-Chief Lori D. Campbell, PhD Associate Editors Fay Betsou, PhD Debra Leiolani Garcia, MPA Judith G. Giri, PhD Karen E. Pitt, PhD Rebecca S. Pugh, MS Katherine C. Sexton, MBA Amy P.N. Skubitz, PhD Stella B. Somiari, PhD Individual Contributors to the Third Edition Jonas Astrin, Susan Baker, Thomas J. Barr, Erica Benson, Mark Cada, Lori Campbell, Antonio Hugo Jose Froes Marques Campos, David Carpentieri, Omoshile Clement, Domenico Coppola, Yvonne De Souza, Paul Fearn, Kelly Feil, Debra Garcia, Judith Giri, William E. Grizzle, Kathleen Groover, Keith Harding, Edward Kaercher, Joseph Kessler, Sarah Loud, Hannah Maynor, Kevin McCluskey, Kevin Meagher, Cheryl Michels, Lisa Miranda, Judy Muller-Cohn, Rolf Muller, James O'Sullivan, Karen Pitt, Rebecca Pugh, Rivka Ravid, Katherine Sexton, Ricardo Luis A. Silva, Frank Simione, Amy Skubitz, Stella Somiari, Frans van der Horst, Gavin Welch, Andy Zaayenga 2012 Best Practices for Repositories: Collection, Storage, Retrieval and Distribution of Biological Materials for Research INTERNATIONAL SOCIETY FOR BIOLOGICAL AND ENVIRONMENTAL REPOSITORIES (ISBER) INTRODUCTION T he availability of high quality biological and environmental specimens for research purposes requires the development of standardized methods for collection, long-term storage, retrieval and distribution of specimens that will enable their future use. Sharing successful strategies for accomplishing this goal is one of the driving forces for the International Society for Biological and Environmental Repositories (ISBER). For more information about ISBER see www.isber.org . ISBER's Best Practices for Repositories (Best Practices) reflect the collective experience of its members and has received broad input from other repository professionals. Throughout this document effective practices are presented for the management of specimen collections and repositories. The term "Best Practice" is used in cases where a level of operation is indicated that is above the basic recommended practice or more specifically designates the most effective practice. It is understood that repositories in certain locations or with particular financial constraints may not be able to adhere to each of the items designated as "Best Practices". Repositories fitting into either of these categories will need to decide how they might best adhere to these recommendations within their particular circumstances. While adherence to ISBER Best Practices is strictly on a voluntary basis, it is important to note that some aspects of specimen management are governed by national/federal, regional and local regulations. The reader should refer directly to regulations for their national/federal, regional and local requirements, as appropriate. ISBER has strived to include terminology appropriate to the various specimen types covered under these practices, but here too, the reader should take steps to ensure the appropriateness of the recommendations to their particular repository type prior to the implementation of any new approaches. Important terms within the document are italicized when first used in a section and defined in the glossary. The ISBER Best Practices are periodically reviewed and revised to reflect advances in research and technology. The third edition of the Best Practices builds on the foundation established in the first and second editions which were published in 2005 and 2008, respectively.
                Bookmark

                Author and article information

                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 October 2015
                01 October 2015
                : 13
                : 5
                : 363-370
                Affiliations
                [ 1 ]Dundee Cancer Centre, Ninewells Hospital and Medical School , Dundee, United Kingdom.
                [ 2 ]School of Veterinary Medicine and Science, University of Nottingham , Leicestershire, United Kingdom.
                [ 3 ]Computer Science, University of Nottingham , Leicestershire, United Kingdom.
                [ 4 ]Advanced Data Analysis Centre, University of Nottingham , Leicestershire, United Kingdom.
                [ 5 ]NHS Tayside, Ninewells Hospital and Medical School , Dundee, United Kingdom.
                [ 6 ]Independent Cancer Patients Voice , London, United Kingdom.
                [ 7 ]Department of Surgical Oncology, MD Anderson Cancer Centre , Houston, Texas.
                Author notes
                Address correspondence to: Dr. Philip R. Quinlan, Dundee Cancer Centre, Ninewells Hospital and Medical School Dundee DD1 9SY, United Kingdom

                E-mail: philip.quinlan@ 123456nottingham.ac.uk
                Article
                10.1089/bio.2014.0099
                10.1089/bio.2014.0099
                4675179
                26418270
                11c51223-5368-444b-9f70-03a2e71ac28a
                © The Author(s) 2015; 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 credited.

                History
                Page count
                Figures: 4, References: 30, Pages: 8
                Categories
                Original Articles

                Comments

                Comment on this article