Biobanks - 2011 Yearbook by GBIResearch

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									                                  Biobanks - 2011 Yearbook
 Reference Code: GBIHC083MR                                                                                                            Publication Date: March 2011


                              Fostering Drug Discovery with the Significant Increase in the Number of Biobanks During
                              1970-2010
In total, biobanks are 39%    Biobanks have recently been developed under the support of public or private initiatives as suitable
national or regional          tools for biomedical research purposes. The number of biobanks significantly increased during
biobanks, 39%                 1989-1999, with significant percentage increase in the 1990s. The majority of biobanks are formed
universities, 19% non-        as an integral part of a university to facilitate research and also to provide samples to external
profit foundations, and       researchers. This report provides in-depth study of 40 major biobanks, with analysis of biobanking
only 3% private.              funding structure and volume of sample sizes in the biobanks, with a major focus on issues
                              concerning biobanks.

                               Biobanks, Global, Increase in Number of Biobanks ( %), 1970-2010

                                                                                    45%


                                                                                    40%
                                     Percentage of Increase in Number of Biobanks




                                                                                    35%


                                                                                    30%


                                                                                    25%


                                                                                    20%


                                                                                    15%


                                                                                    10%


                                                                                    5%


                                                                                    0%
                                                                                          <1970   1970-1979        1980-1989        1990-1999         2000-2010
                                                                                                                     Year


                               Source: GBI Research




                              The Majority of Issues Affecting the Growth of Biobanks are Common to all Biobanks
                              The availability of a specific type of sample and a particular mode of storage are some of the
                              common issues in biobanks. A tumor tissue repository (TTR) is a source of brain tumor samples,
                              which suffers from the difficulty of the unavailability of normal brain samples to use as controls
                              during studies. The situation is similar in other types of biobank. Comparative studies are
                              increasingly difficult due to the unavailability of negative samples such as controls.
                              Sample storage also plays a vital role in each biobank. Among the various ways to store tissue,
                              such as formalin fixed, paraffin embedded blocks and snap frozen samples, frozen tissue is always
                              in significant demand and so preserving tissue via this method is popular.




Biobanks - 2011 Yearbook                                                                                                             GBIHC083MR / Published MAR 2011
                                                                                                                                                                  Page 1
                                                                                                   © GBI Research. This is a licensed product and is not to be photocopied
                           Stand-Alone Biobanks Outline Strength of the Biobanking Sector
                           In a comparative study of more than 100 biobanks around the world, many biobanks are found to
                           be stand-alone, with the whole funding received by the government of the country. Around 70% of
                           biobanks are stand-alone, whereas only 30% are partnered with other biobanks or institutions.

                            Biobanks, Global, Comparison of Based on the Type of Partnerships (%) -2010




                                     Partnership Biobanks
                                             32%




                                                                                                      Stand-alone Biobanks
                                                                                                              68%




                            Source: GBI Research, BBMRI




                           In total, biobanks are 39% national or regional biobanks, 39% universities, 19% non-profit
                           foundations, and only 3% private. With 39% each, national biobanks and universities play a major
                           role in this sector, while non-profit foundations generally suffer from funding problems, as there is
                           no continuous source of income. The private sector is comparably small and mostly confined to the
                           biobanks associated market, which includes equipment, liquid storage, and so on.




Biobanks - 2011 Yearbook                                                                        GBIHC083MR / Published MAR 2011
                                                                                                                             Page 2
                                                              © GBI Research. This is a licensed product and is not to be photocopied
                           1         Table of Contents
                           1   Table of Contents ........................................................................................................................ 3
                               1.1    List of Tables..................................................................................................................... 7
                               1.2    List of Figures ................................................................................................................... 7
                           2   Biobanks – Introduction ............................................................................................................... 8
                               2.1    GBI Research Report Guidance ....................................................................................... 9
                           3   Biobanks – The Basics .............................................................................................................. 10
                               3.1    Introduction ..................................................................................................................... 10
                                  3.1.1    DNA Banks .............................................................................................................. 11
                                  3.1.2    Cell Culture Banks ................................................................................................... 11
                                  3.1.3    Pathologically Altered Vital Tissue Banks................................................................ 11
                               3.2    Biobanks - Brief History................................................................................................... 12
                                  3.2.1    Framingham Heart Study......................................................................................... 12
                                  3.2.2    Monitoring of Cardiovascular Diseases Project ....................................................... 12
                               3.3    Characteristics of a Biobank ........................................................................................... 13
                               3.4    Classification of Biobanks ............................................................................................... 14
                                  3.4.1    Population-Based Biobanks..................................................................................... 14
                                  3.4.2    Disease-Based Biobanks......................................................................................... 14
                           4   Biobanks – Overview ................................................................................................................. 15
                               4.1    Introduction ..................................................................................................................... 15
                               4.2    National Biobanks ........................................................................................................... 15
                               4.3    Funding Structure in Biobanking ..................................................................................... 16
                                  4.3.1    Funding Issues ........................................................................................................ 16
                                  4.3.2    Private Funding ....................................................................................................... 16
                                  4.3.3    Public-Private Funding............................................................................................. 17
                                  4.3.4    Public Funding ......................................................................................................... 17
                               4.4    Partnerships Structure in Biobanking .............................................................................. 17
                                  4.4.1    Comparison of Partnerships .................................................................................... 18
                               4.5    Increasing Harmonization ............................................................................................... 18
                                  4.5.1    Biobanks Participating in Harmonization ................................................................. 18
                               4.6    Expert Centers – Trans-national Research ..................................................................... 19
                                  4.6.1    Benefits of Expert Centers....................................................................................... 19
                               4.7    Cost of Biobanks ............................................................................................................. 20
                                  4.7.1    Sample Collection.................................................................................................... 20
                                  4.7.2    The Set up of the Biobank ....................................................................................... 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............................................................................................................... 20
                               4.8    SWOT Analysis of Biobanking Sector ............................................................................. 21
                           5   Biobanks – Population-based Biobanks .................................................................................... 22
                               5.1    Introduction ..................................................................................................................... 22
                                  5.1.1    Cohort study or Panel Study.................................................................................... 23
                               5.2    deCODE Genetics .......................................................................................................... 23
                                  5.2.1    Background Information........................................................................................... 23
                                  5.2.2    Organizational Structure .......................................................................................... 24
                                  5.2.3    Financial Support..................................................................................................... 24
                                  5.2.4    Collaborations.......................................................................................................... 25
                                  5.2.5    Future Plan .............................................................................................................. 25
                               5.3    CARTaGENE .................................................................................................................. 26
                                  5.3.1    Background Information........................................................................................... 26
                                  5.3.2    Organizational Structure .......................................................................................... 26
                                  5.3.3    Financial Support..................................................................................................... 26
                                  5.3.4    Collaborations.......................................................................................................... 27


Biobanks - 2011 Yearbook                                                                                                  GBIHC083MR / Published MAR 2011
                                                                                                                                                                 Page 3
                                                                             © GBI Research. This is a licensed product and is not to be photocopied
                              5.3.5    Future Plan .............................................................................................................. 27
                           5.4    Genizon Biosciences....................................................................................................... 27
                              5.4.1    Background Information........................................................................................... 27
                              5.4.2    Organizational Structure .......................................................................................... 27
                              5.4.3    Financial Support..................................................................................................... 28
                              5.4.4    Collaborations.......................................................................................................... 28
                              5.4.5    Future Plan .............................................................................................................. 28
                           5.5    Jurilab ............................................................................................................................. 29
                              5.5.1    Background Information........................................................................................... 29
                              5.5.2    Organizational Structure .......................................................................................... 29
                              5.5.3    Financial Support..................................................................................................... 29
                              5.5.4    Collaborations.......................................................................................................... 29
                              5.5.5    Future Plan .............................................................................................................. 29
                           5.6    LifeGene ......................................................................................................................... 30
                              5.6.1    Background Information........................................................................................... 30
                              5.6.2    Organizational Structure .......................................................................................... 30
                              5.6.3    Financial Support..................................................................................................... 30
                              5.6.4    Collaborations.......................................................................................................... 30
                              5.6.5    Future Plan .............................................................................................................. 30
                           5.7    UK DNA Banking Network (UDBN) ................................................................................. 31
                              5.7.1    Background Information........................................................................................... 31
                              5.7.2    Organizational Structure .......................................................................................... 31
                              5.7.3    Financial Support..................................................................................................... 32
                              5.7.4    Collaborations.......................................................................................................... 33
                              5.7.5    Future Plan .............................................................................................................. 34
                           5.8    European Network for Genetic and Genomic Epidemiology (ENGAGE)......................... 35
                              5.8.1    Background Information........................................................................................... 35
                              5.8.2    Organizational Structure .......................................................................................... 36
                              5.8.3    Financial Support..................................................................................................... 36
                              5.8.4    Collaborations.......................................................................................................... 37
                              5.8.5    Future Plan .............................................................................................................. 37
                           5.9    TRANSBIG Network........................................................................................................ 37
                              5.9.1    Background Information........................................................................................... 37
                              5.9.2    Organizational Structure .......................................................................................... 38
                              5.9.3    Financial Support..................................................................................................... 38
                              5.9.4    Outreach Strategies................................................................................................. 39
                              5.9.5    Collaborations.......................................................................................................... 39
                              5.9.6    Future Plan .............................................................................................................. 39
                           5.10 Iceland Health Sector Database ..................................................................................... 39
                              5.10.1 Background Information........................................................................................... 39
                              5.10.2 Organizational Structure .......................................................................................... 39
                              5.10.3 Financial Support..................................................................................................... 39
                              5.10.4 Collaborations.......................................................................................................... 39
                              5.10.5 Future Plan .............................................................................................................. 40
                           5.11 Tumor Bank of Castilla-Leon (BTCyL) ............................................................................ 40
                              5.11.1 Background Information........................................................................................... 40
                              5.11.2 Organizational Structure .......................................................................................... 41
                              5.11.3 Financial Support..................................................................................................... 41
                              5.11.4 Collaborations.......................................................................................................... 41
                              5.11.5 Future Plan .............................................................................................................. 41
                           5.12 Telethon Genetic Biobank Network................................................................................. 42
                              5.12.1 Background Information........................................................................................... 42
                              5.12.2 Organizational Structure .......................................................................................... 42
                              5.12.3 Financial Support..................................................................................................... 43
                              5.12.4 Collaborations.......................................................................................................... 43

Biobanks - 2011 Yearbook                                                                                                GBIHC083MR / Published MAR 2011
                                                                                                                                                                Page 4
                                                                          © GBI Research. This is a licensed product and is not to be photocopied
                                5.12.5 Future Plan .............................................................................................................. 43
                             5.13 EuroBiobank ................................................................................................................... 44
                                5.13.1 Background Information........................................................................................... 44
                                5.13.2 Organizational Structure .......................................................................................... 45
                                5.13.3 Financial Support..................................................................................................... 46
                                5.13.4 Collaborations.......................................................................................................... 46
                                5.13.5 Future Plan .............................................................................................................. 46
                             5.14 Latvian Biobank .............................................................................................................. 47
                                5.14.1 Background Information........................................................................................... 47
                                5.14.2 Organizational Structure .......................................................................................... 47
                                5.14.3 Financial Support..................................................................................................... 47
                                5.14.4 Collaborations.......................................................................................................... 47
                                5.14.5 Future Plan .............................................................................................................. 47
                             5.15 Canadian Partnership for Tomorrow Project ................................................................... 48
                                5.15.1 Background Information........................................................................................... 48
                                5.15.2 Organizational Structure .......................................................................................... 48
                                5.15.3 Financial Support..................................................................................................... 48
                                5.15.4 Collaborations.......................................................................................................... 48
                                5.15.5 Future Plan .............................................................................................................. 48
                           6 Biobanks – Disease-Based Biobanks ........................................................................................ 49
                             6.1    Introduction ..................................................................................................................... 49
                             6.2    Cancer Biobanks............................................................................................................. 49
                                6.2.1    Victorian Cancer Biobank ........................................................................................ 49
                                6.2.2    The Ontario Tumor Bank ......................................................................................... 50
                                6.2.3    The Canadian Tumor Repository Network............................................................... 51
                                6.2.4    Tumor Tissue Repository......................................................................................... 51
                             6.3    Brain Biobanking ............................................................................................................. 52
                                6.3.1    Huddinge Brain Biobank .......................................................................................... 52
                                6.3.2    MRC London Brain Bank for Neurodegenerative Diseases..................................... 53
                                6.3.3    The MRC HIV Brain and Tissue Bank ..................................................................... 54
                                6.3.4    The MRC Sudden Death Brain and Tissue Bank .................................................... 54
                                6.3.5    CJD Brain and Tissue Bank..................................................................................... 55
                                6.3.6    UK Multiple Sclerosis Tissue Bank .......................................................................... 55
                                6.3.7    South West Dementia Brain Bank ........................................................................... 56
                                6.3.8    Queen Square Brain Bank for Neurological Disorders ............................................ 56
                                6.3.9    Newcastle Brain Tissue Resource ........................................................................... 57
                             6.4    Twin Registries ............................................................................................................... 57
                                6.4.1    GenomeEUTwin ...................................................................................................... 57
                                6.4.2    The Australian Twin Registry................................................................................... 58
                                6.4.3    The Mid-Atlantic Twin Registry ................................................................................ 59
                             6.5    Stem Cell Biobanking...................................................................................................... 60
                                6.5.1    The Singapore Stem Cell Consortium ..................................................................... 60
                                6.5.2    Coriell Stem Cell Biobank ........................................................................................ 60
                                6.5.3    Swiss Stem Cells Bank............................................................................................ 61
                             6.6    Children Biobanks ........................................................................................................... 61
                                6.6.1    The Norwegian Mother and Child Cohort Study (MoBa) ......................................... 61
                                6.6.2    Avon Longitudinal Study of Parents and Children (ALSPAC) .................................. 62
                             6.7    Largest Biobanks and Biobanking Networks in the World............................................... 63
                                6.7.1    The Public Population Project in Genomics (P3G) .................................................. 63
                                6.7.2    Estonian Genome Project (EGP)............................................................................. 65
                                6.7.3    Singapore Tissue Network....................................................................................... 66
                                6.7.4    UK Biobank.........................
								
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