Biobanks - 2012 Year Book by GBIResearch

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									Biobanks - 2012 Year Book
GBI Research Report Guidance




                                              GBI Research Report Guidance
                                                    GBI Research’s report “Biobanks – 2012 Yearbook” provides an in-depth study of the existing biobanks
                                                    around the world. The report also provides competitive benchmarking for the leading biobanks. This
                                                    report is built using data and information sourced from proprietary databases, primary and secondary
                                                    research and in-house analysis by GBI Research’s team of industry experts. Each chapter is
                                                    supplemented with a key takeaway summary that provides the major conclusion from that section.
                                              ·     Chapter two provides a basic understanding of biobanking processes.
                                              ·     Chapter three provides an overview of biobanks along with the current trends in biobanking.
                                              ·     Chapter four gives a detailed account of population-based biobanks.
                                              ·     Chapter five gives a detailed account of disease-based biobanks.
                                              ·     Chapter six denotes the regulatory and ethical issues.
                                              ·     Chapter seven concludes the report by looking at the challenges for biobanks.




  © GBI Research. This is a licensed product and is not to be photocopied                                                    GBIHC218MR / Published JUL 2012
                                                                                                                                                      Page 2
Executive Summary




                                                    Executive Summary
                                                    Significant Increase in the Number of Biobanks during 1970-2010 is Fostering Drug Discovery
                                                    Biobanks have recently been developed under the support of public or private initiatives as suitable
      The period between 1990                       tools for biomedical research purposes. The number of biobanks significantly increased between 1980
      and 1999 saw a 42%                            and 1999, with the most significant percentage increase taking place in the 1990s. The period between
      increase in the number of                     1990 and 1999 saw a 42% increase in the number of biobanks, compared to a 12% increase observed
      biobanks, compared to a                       in 1980 - 1989 and a 4% increase in 1970 - 1979. 2000-2010 experienced saw the number of biobanks
      12% increase observed in                      grow by 36%. The majority of biobanks are formed as an integral part of a university to facilitate
      1980 -1989 and a 4%                           research and also to provide samples to external researchers. This report provides an in-depth study of
      increase in 1970–1979                         37 major biobanks, including an analysis of biobank funding structure, sample volumes, and current
                                                    issues.
                                                    Majority of Issues Affecting the Growth of Biobanks are Common to all Biobanks
                                                    The availability of specific sample types and particular modes of storage are common issues in
                                                    biobanks. Tumor tissue repositories (TTR) for example are a source of brain tumor samples. These
                                                    repositories are experiencing difficulties as a result of the unavailability of normal brain samples to use
                                                    as controls during studies. The situation is similar in other types of biobank, and the unavailability of
                                                    negative samples such as controls is making comparative study increasingly difficult.
                                                    Stand-Alone Biobanks Outline Strength of the Biobanking Sector
                                                    In a comparative study of more than 100 biobanks around the world, the majority of biobanks were
                                                    found to be stand-alone and received all their funding from government. Around 70% of biobanks
                                                    were stand-alone, whereas only 30% were partnered with other biobanks or institutions; this is shown
                                                    in the figure below.

                                                Biobanks, Global, Biobank Identity Based on the Type of Partnership (%), 2010




                                                            Partnership Biobanks
                                                                    32%




                                                                                                                               Stand-alone Biobanks
                                                                                                                                       68%




                                                Source: GBI Research, European Commission Joint Research Center. (2010).




                                                    In total, 39% of biobanks in the study were national or regional biobanks, 39% are owned by
                                                    universities, 19% are owned by non-profit foundations, and only 3% are private (European Commission
                                                    Joint Research Center, 2010). National biobanks and universities therefore play a major role in this
                                                    sector, while non-profit foundations generally suffer from funding problems as they tend not to have a
                                                    continuous source of income. The market share of the private sector is comparably small and is mostly
                                                    confined to the biobanks associated market, which includes equipment and liquid storage.




  © GBI Research. This is a licensed product and is not to be photocopied                                                       GBIHC218MR / Published JUL 2012
                                                                                                                                                         Page 3
Table of Contents




                                              1         Table of Contents
                                              1   Table of Contents ........................................................................................................................................ 4
                                                  1.1      List of Tables .................................................................................................................................... 7
                                                  1.2      List of Figures................................................................................................................................... 7
                                              2   Introduction ................................................................................................................................................ 8
                                              3   Biobanks – The Basics ................................................................................................................................. 9
                                                  3.1      Introduction..................................................................................................................................... 9
                                                  3.2      Types of Biobanks ............................................................................................................................ 9
                                                      3.2.1      DNA Banks ............................................................................................................................... 9
                                                      3.2.2      Cell Culture Banks .................................................................................................................... 9
                                                      3.2.3      Pathologically Altered Vital Tissue Banks .............................................................................. 10
                                                  3.3      Benefits of Biobanks ...................................................................................................................... 10
                                                  3.4      Biobanks - Brief History ................................................................................................................. 11
                                                      3.4.1      Framingham Heart Study ...................................................................................................... 11
                                                      3.4.2      Monitoring of Cardiovascular Diseases Project ..................................................................... 12
                                                  3.5      Characteristics of a Biobank .......................................................................................................... 12
                                                  3.6      Classification of Biobanks .............................................................................................................. 12
                                                      3.6.1      Population-Based Biobanks ................................................................................................... 12
                                                      3.6.2      Disease-Based Biobanks ........................................................................................................ 12
                                              4   Biobanks – Overview ................................................................................................................................. 13
                                                  4.1      Introduction................................................................................................................................... 13
                                                  4.2      National Biobanks.......................................................................................................................... 13
                                                  4.3      Funding Structure in Biobanking ................................................................................................... 13
                                                      4.3.1      Funding Issues ....................................................................................................................... 14
                                                      4.3.2      Private Funding ..................................................................................................................... 14
                                                      4.3.3      Public-Private Funding........................................................................................................... 14
                                                      4.3.4      Public Funding ....................................................................................................................... 15
                                                  4.4      Partnerships Structure in Biobanking ............................................................................................ 16
                                                      4.4.1      Comparison of Partnerships .................................................................................................. 17
                                                  4.5      Increasing Harmonization.............................................................................................................. 18
                                                      4.5.1      Biobanks Participating in Harmonization .............................................................................. 18
                                                  4.6      Expert Centers – Trans-national Research..................................................................................... 19
                                                  4.7      Cost of Biobanks ............................................................................................................................ 20
                                                      4.7.1      Sample Collection .................................................................................................................. 20
                                                      4.7.2      Biobank Set Up ...................................................................................................................... 20
                                                      4.7.3      Maintenance of the Biobank ................................................................................................. 20
                                                      4.7.4      Research Costs ...................................................................................................................... 20
                                                      4.7.5      Outreach Activities ................................................................................................................ 20
                                                      4.7.6      Conclusion ............................................................................................................................. 21
                                                  4.8      SWOT Analysis of Biobanking Sector ............................................................................................. 21
                                                      4.8.1      Strengths ............................................................................................................................... 21
                                                      4.8.2      Weaknesses ........................................................................................................................... 22
                                                      4.8.3      Opportunities ........................................................................................................................ 22
                                                      4.8.4      Threats .................................................................................................................................. 22
                                              5   Biobanks – Population-based Biobanks .................................................................................................... 23
                                                  5.1      Introduction................................................................................................................................... 23
                                                      5.1.1      Cohort study or Panel Study .................................................................................................. 24
                                                  5.2      deCODE Genetics ........................................................................................................................... 24
                                                      5.2.1      Background Information ....................................................................................................... 24
                                                      5.2.2      Organizational Structure ....................................................................................................... 25
                                                      5.2.3      Financial Support................................................................................................................... 25


  © GBI Research. This is a licensed product and is not to be photocopied                                                                                           GBIHC218MR / Published JUL 2012
                                                                                                                                                                                             Page 4
Table of Contents




                                                      5.2.4     Collaborations ....................................................................................................................... 26
                                                      5.2.5     Future Plan ............................................................................................................................ 26
                                                  5.3      CARTaGENE ................................................................................................................................... 26
                                                      5.3.1     Background Information ....................................................................................................... 26
                                                      5.3.2     Organizational Structure ....................................................................................................... 27
                                                      5.3.3     Financial Support................................................................................................................... 27
                                                      5.3.4     Collaborations ....................................................................................................................... 27
                                                      5.3.5     Future Plan ............................................................................................................................ 28
                                                  5.4      UK DNA Banking Network ............................................................................................................. 28
                                                      5.4.1     Background Information ....................................................................................................... 28
                                                      5.4.2     Organizational Structure ....................................................................................................... 28
                                                      5.4.3     Financial Support................................................................................................................... 29
                                                      5.4.4     Collaborations ....................................................................................................................... 30
                                                      5.4.5     Future Plan ............................................................................................................................ 31
                                                  5.5      European Network for Genetic and Genomic Epidemiology (ENGAGE) ........................................ 31
                                                      5.5.1     Background Information ....................................................................................................... 31
                                                      5.5.2     Organizational Structure ....................................................................................................... 32
                                                      5.5.3     Financial Support................................................................................................................... 33
                                                      5.5.4     Collaborations ....................................................................................................................... 33
                                                      5.5.5     Future Plan ............................................................................................................................ 33
                                                  5.6      TRANSBIG Network ....................................................................................................................... 34
                                                      5.6.1     Background Information ....................................................................................................... 34
                                                      5.6.2     Organizational Structure ....................................................................................................... 35
                                                      5.6.3     Financial Support................................................................................................................... 35
                                                      5.6.4     Collaborations ....................................................................................................................... 36
                                                      5.6.5     Future Plan ............................................................................................................................ 36
                                                  5.7      Iceland Health Sector Database .................................................................................................... 36
                                                      5.7.1     Background Information ....................................................................................................... 36
                                                      5.7.2     Organizational Structure ....................................................................................................... 36
                                                      5.7.3     Financial Support................................................................................................................... 36
                                                      5.7.4     Collaborations ....................................................................................................................... 36
                                                      5.7.5     Future Plan ............................................................................................................................ 37
                                                  5.8      Tumor Bank of Castilla-Leon (BTCyL) ............................................................................................. 37
                                                      5.8.1     Background Information ....................................................................................................... 37
                                                      5.8.2     Organizational Structure ....................................................................................................... 37
                                                      5.8.3     Financial Support................................................................................................................... 38
                                                  5.9      Telethon Genetic Biobank Network .............................................................................................. 38
                                                      5.9.1     Background Information ....................................................................................................... 38
                                                      5.9.2     Organizational Structure ....................................................................................................... 38
                                                      5.9.3     Financial Support................................................................................................................... 39
                                                      5.9.4     Collaborations ....................................................................................................................... 39
                                                      5.9.5     Future Plan ............................................................................................................................ 40
                                                  5.10 EuroBiobank .................................................................................................................................. 40
                                                      5.10.1 Background Information ....................................................................................................... 40
                                                      5.10.2 Organizational Structure ....................................................................................................... 41
                                                      5.10.3 Financial Support................................................................................................................... 42
                                                      5.10.4 Collaborations ....................................................................................................................... 42
                                                      5.10.5 Future Plan ............................................................................................................................ 43
                                                  5.11 Latvian Biobank ............................................................................................................................. 43
                                                      5.11.1 Background Information ....................................................................................................... 43
                                                      5.11.2 Organizational Structure ....................................................................................................... 43
                                                      5.11.3 Financial Support................................................................................................................... 43


  © GBI Research. This is a licensed product and is not to be photocopied                                                                                       GBIHC218MR / Published JUL 2012
                                                                                                                                                                                         Page 5
Table of Contents




                                                    5.11.4 Collaborations ....................................................................................................................... 43
                                                    5.11.5 Future Plan ............................................................................................................................ 43
                                                5.12 Canadian Partnership for Tomorrow Project ................................................................................ 43
                                                    5.12.1 Background Information ....................................................................................................... 43
                                                    5.12.2 Organizational Structure ....................................................................................................... 43
                                                    5.12.3 Financial Support................................................................................................................... 43
                                                    5.12.4 Collaborations ....................................................................................................................... 44
                                                    5.12.5 Future Plan ............................................................................................................................ 44
                                              6 Biobanks – Disease-Based Biobanks.......................................................................................................... 45
                                                6.1      Introduction................................................................................................................................... 45
                                                6.2      Cancer Biobanks ............................................................................................................................ 46
                                                    6.2.1     Victorian Cancer Biobank ...................................................................................................... 46
                                                    6.2.2     The Ontario Tumor Bank ....................................................................................................... 46
                                                    6.2.3     The Canadian Tumor Repository Network............................................................................. 47
                                                    6.2.4     Tumor Tissue Repository ....................................................................................................... 47
                                                6.3      Brain Biobanking ........................................................................................................................... 48
                                                    6.3.1     Huddinge Brain Biobank ........................................................................................................ 48
                                                    6.3.2     MRC London Brain Bank for Neurodegenerative Diseases .................................................... 49
                                                    6.3.3     The MRC HIV Brain and Tissue Bank...................................................................................... 49
                                                    6.3.4     The MRC Sudden Death Brain and Tissue Bank ..................................................................... 50
                                                    6.3.5     CJD Brain and Tissue Bank..................................................................................................... 50
                                                    6.3.6     UK Multiple Sclerosis Tissue Bank ......................................................................................... 50
                                                    6.3.7     South West Dementia Brain Bank ......................................................................................... 51
                                                    6.3.8     Queen Square Brain Bank for Neurological Disorders ........................................................... 51
                                                    6.3.9     Newcastle Brain Tissue Resource .......................................................................................... 52
                                                6.4      Twin Registries .............................................................................................................................. 52
                                                    6.4.1     GenomEUTwin ....................................................................................................................... 52
                                                    6.4.2     The Australian Twin Registry ................................................................................................. 53
                                                    6.4.3     The Mid-Atlantic Twin Registry ............................................................................................. 54
                                                6.5      Stem Cell Biobanking ..................................................................................................................... 55
                                                    6.5.1     The Singapore Stem Cell Consortium..................................................................................... 55
                                                    6.5.2     Coriell Stem Cell Biobank ....................................................................................................... 55
                                                    6.5.3     Swiss Stem Cells Bank ............................................................................................................ 56
                                                6.6      Children Biobanks .......................................................................................................................... 56
                                                    6.6.1     The Norwegian Mother and Child Cohort Study (MoBa) ....................................................... 57
                                                    6.6.2     Avon Longitudinal Study of Parents and Children (ALSPAC) .................................................. 57
                                                6.7      Largest Biobanks and Biobanking Networks in the World ............................................................. 58
                                                    6.7.1     The Public Population Project in Genomics (P3G).................................................................. 58
                                                    6.7.2     Estonian Genome Project (EGP) ............................................................................................ 58
                                                    6.7.3     Singapore Tissue Network ..................................................................................................... 59
                                                    6.7.4     UK Biobank ............................................................................................................................ 59
                                                    6.7.5     International Genomics Consortium (IGC) ............................................................................. 60
                                              7 Biobanks – Regulatory and Ethical Issues and Challenges ........................................................................ 62
                                                7.1      Introduction................................................................................................................................... 62
                                                7.2      Issues Related to Biobanking ......................................................................................................... 62
                                                    7.2.1     Informed Consent .................................................................................................................. 62
                                                    7.2.2     Confidentiality ....................................................................................................................... 62
                                                    7.2.3     Returning Results from Biobank ............................................................................................ 62
                                                    7.2.4     Secondary Use of Samples Collected Over Time .................................................................... 63
                                                7.3      Challenges Faced by Biobanks ....................................................................................................... 64
                                                7.4      Conclusions.................................................................................................................................... 64
                                              8 Biobanks – Appendix ................................................................................................................................. 65


  © GBI Research. This is a licensed product and is not to be photocopied                                                                                       GBIHC218MR / Published JUL 2012
                                                                                                                                                                                         Page 6
Table of Contents




                                                  8.1      Market Definitions......................................................................................................................... 65
                                                  8.2      Abbreviations ................................................................................................................................ 65
                                                  8.3      Sources .......................................................................................................................................... 67
                                                  8.4      Research Methodology ................................................................................................................. 68
                                                      8.4.1     Coverage ...................................................................................................................
								
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