Biobanks - 2012 Year Book

Biobanks - 2012 Year Book

Summary

GBI Research, the leading business intelligence provider, has released its latest report, “Biobanks - 2012 Year Book”. It provides key data, information and analysis of 37 of the world’s major biobanks. The report provides information on population-based biobanks, disease based biobanks, brain biobanks, stem cell biobanking, twin registries, children biobanks and many national biobanks. It also provides comprehensive analysis of funding, harmonization, the cost of biobanking, and partnership structure. In addition, the report reviews the factors determining the success and failure of biobanks.

The 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.

Biobanking is a relatively new field with promising potential. It presents a host of opportunities and challenges. Funding patterns have changed as biobanks have evolved; in a comparative study of more than 100 biobanks around the world, the majority of biobanks were found to be stand-alone, and were entirely funded by the government of the country. Around 70% of biobanks are stand-alone, whereas only 30% are partnered with other biobanks or institutions. With globalization and a growing interest in trans-national sharing of biobank resources, there is an increasing push to harmonize biobank processes and regulations. The process of setting up a new biobank is the most costly phase of a biobank’s development and lifespan. The maintenance cost of a biobank is marginal compared to the cost of set-up.

Scope

- A comprehensive study of 37 major biobanks in the world along with the current trends in biobanking.
- A detailed account of population-based biobanks, disease-based biobanks, brain biobanks, stem cell biobanking, twin registries, children biobanks and many national biobanks.
- A comparative study of the major issues concerning biobanks including funding, harmonization, the cost of biobanking, partnership structure, and regulatory and ethical issues.
- In-depth analysis of the major developments in the leading segments of biobanks with key emphasis on major challenges in the biobanking sector.

Reasons to buy

- Evaluate major biobanks in the world, their service providers, research collaborations and private sector involvement.
- Analyze issues of funding, harmonization, the cost of biobanking, and partnership structure that determine strength and limitation of a biobank.
- Develop strategic initiatives by understanding the key focus of research of the leading biobanks.
- Accelerate and strengthen your market position by identifying key biobanks for mergers, acquisitions and strategic partnerships to accelerate research and development.
- Devise better strategies through the understanding of key drivers and barriers in the market.
- Develop understanding on recent developments in biobanking regulatory frameworks and ethical issues like informed consent, withdrawal of ownership, confidentiality and commercialization.

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
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
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
8.1 Market Definitions 65
8.2 Abbreviations 65
8.3 Sources 67
8.4 Research Methodology 68
8.4.1 Coverage 68
8.4.2 Secondary Research 68
8.4.3 Primary Research 68
8.4.4 Expert Panel Validation 69
8.5 Contact Us 69
8.6 Disclaimer 69

1.1 List of Tables
Table 1: Comparison of Funding Sources for Eight Major Biobanks - 2010 15
Table 2: Biobanks, International Biobanks involved in Harmonization Programs 18
Table 3: Biobanks, Applications and Strengths of Population-based Biobanks 23
Table 4: Biobanks, deCODE Genetics Overview 24
Table 5: Biobanks, CARTaGENE Overview 27
Table 6: Biobanks, Type and Number of Sample Collections Available at UKDBN- 2010 29
Table 7: Biobanks, UK DNA Banking Network Overview 30
Table 8: Biobanks, European Network for Genetic and Genomic Epidemiology Overview 32
Table 9: Biobanks, TRANSBIG Network Overview 34
Table 10: Biobanks, Iceland Health Sector Database Overview 37
Table 11: Biobanks, Biobanks with Sample Sizes of ≥200,000, 2010 45
Table 12: Biobanks, Largest Children Biobank Projects around the World - 2010 56

1.2 List of Figures
Figure 1: Biobanks, Global, Anticipated Benefits 10
Figure 2: Biobanks, Global, Type of Data and Sources Obtained from Biobanks 11
Figure 3: Biobanks, Classification: Type of Sample Availability 13
Figure 4: Biobanks, Type of Partnerships, Europe (%), 2010 16
Figure 5: Biobanks, Ownership of Biobanks, Europe, 2010 17
Figure 6: Biobanks, Global, Expert Centers Facilitating Trans-national Research 19
Figure 7: SWOT Analysis of Biobanking Sector 21
Figure 8: Biobanks, ENGAGE, Funding Sources (%) - 2011 33
Figure 9: Biobanks, TRANSBIG, Network Funding Sources (%) - 2011 35
Figure 10: Biobanks, EuroBiobank, Main Objectives - 2011 41
Figure 11: Biobanks, Frequency of Registrants by Age at Mid-Atlantic Twin Registry - 2011 54
Figure 12: Biobanks, Major Issues Threatening Biobanks - 2011 63