Global Perspectives on Biobanking and Access to Samples

1. The Australian Experience: Issues
and Solutions
A/Prof Daniel Catchpoole
The Tumour Bank
The Children’s Hospital at Westmead
Cancer Institute NSW, Biobanking Stakeholders Meeting, May, 2015

2. Building Sustainable Biobanking
“The 5 M’s”
Model
Practice
Purpose
Money
Sustainable
Sufficient
Mandate
Authority
Actionable
Motivation Measure
Beneficiary
Benefit Empirical
Effective

3. Banking Purpose – $$$ Transfer

4. Biobanking Purpose – Biospecimen Transfer
Application
Biobanker
Issuing
Institution
Responsible
Institution
Researcher
Governance
Material Transfer
Agreement
Employment
Reporting

5. An Inconvenient Truth: “Biohoards” not Banks
Biohoards – collections of biospecimens are not readily available to the
researchers who have the ability to generate new medical knowledge through
translational research.
D.R. Catchpoole, Journal of Health Services and Research Policy, 21(2), 140-142, 2016.

6. Mandated Purpose – “Open Access”

7. Open vs Closed Access
OHMR Survey 2013: NSW Biobanks
n=38
40%
60%

8. Biobanking: Why do we do it?
Knowledge

9. Purpose Determines Knowledge Potential
Purpose Name Ethics Marketing Potential
BiobankGeneral HighRequiredOpen
ArchiveMedico-Legal Retrospective MinimalNone
“Biohoard”None None NoneNone
Product LineCommercial Mandatory Highest BidderRestricted
Specific
Collection
Cohort
Limited None Limited

10. Biobanking: Why do we do it??
CHW Admits up to 150 cancers kids each year.
Of most significance, through the activities of TB-CHW this small
population of patients have been entered into world class, cutting
edge research programs performed in leading research centres
around the world.
The TB-CHW has allowed us to gain knowledge about our local
patients whilst comparing them with patients from other lands
with similar disorders.
In so doing the relevance of published research to our local
patients is immediately and directly known.
Knowledge…..
About ourselves.

11. Building Sustainable Biobanking
“The 5 M’s”
Model
Practice
Purpose
Money
Sustainable
Sufficient
Mandate
Authority
Actionable
Motivation Measure
Beneficiary
Benefit Empirical
Effective

12. “So you run a tumour bank. How many
sample have you collected?”
Numerous Anonymous – common response by research professionals
when responding to the answer about what I do.

13. Measuring Success? - Collection
Numbers of Sample in Collection
Pathology Standards
NATA Accreditation
Managerial Efficiency – Time Saved
Geographical Reach
‘Bang for Buck’
Public or Political Status
Level of Control

14. Measuring Success? - Distribution
Numbers of Sample Distributed
Research Quality
Accreditation/Certification
Managerial Efficiency – Time Saved
Marketing and Distribution
Geographical Reach
Publications and Grants
‘Bang for Buck’
Public, Social or Political Status
Level of Control
Research Output
Health Outcomes

15. Key Questions? – “What matters most is…..?”
“A Good Bank is an Empty Bank”
W. Grizzle
Other key questions that need to be asked (and answered.!)…
1. Has translational research been better off with your biobank?
2. Has your biobank created more research opportunity and
allowed new questions to be asked?
3. Has your biobank accelerated scientific discovery and the
generation of new knowledge?
4. Is your biobank value for money?
Accountability?

16. Accountability Example – Locator Effectiveness?
Many Dollars Spent on Locators….
Web-based portals for searching tissue collections.
Centralised database – often sparsely populated.
Allow investigators to identify and locate required tissue.
Difficult to maintain? Sustainability?
Examples…
• ABN-Oncology Tissue - http://abrn.net/tsl/
• Pathology Specimen Locator-Dana Faber Cancer Centre
• Arizona Biospecimen Locator
• Biospecimen Locator Stanford

17. Online Locators – Are they Effective?
• ……BUT…..
• Are they being used?
• Are they being promoted and advertised?
• Are they effective? Is this reported?
• How do we measure effectiveness of such infrastructure?
• What level of information detail is required before researchers
will use them?
• Are they worth the money? Maintenance? Time?

18. ‘Foot in the door success’ at The Tumour Bank.
Commenced operations in 1998 – operational through ‘Genomics Era’
Purpose was to facilitate research through Open Access to high quality, well
annotated childhood cancer biospecimens.
Investigators seek samples through application process.
Direct to Researcher Marketing – ie, we approach the researchers!!
Supported 90+ projects .
Entered into research discourse with applicant before submission
“Tissue Handling Experts” – provided additional tissue processing.
~
Zhuo and Catchpoole, “Spanning the genomics era: the vital role of a single
institution biorepository for childhood cancer research over a decade.”,
Translational Paediatrics, 4(2), 93-106, 2015.

19. 16%
59%
11%
9%
1% 1%
Disease classification of out-sample in Europe
27%
10%
15%
1%
12%
0%
18%
5%
9%
3%
Disease classification of out-
sample in North America
72%
4%
12%
1%
8% 0%
Disease classification of out-sample in Oceania
Leukemias CNS and miscellaneous intracranial and intraspinal neoplasms
neuroblastoma and other peripheral nervous cell tumors renal tumour
Malignant bone tumors Soft tissue and other extraosseous sarcomas
control germ cell tumour
lymphomas Hepatic tumors
rare

20. Project Time Lines
Gene expression
DNA Sequencing
Methylation
Multiple Techniques
Application Received
Publication Gained
Archival Biobank
Zhuo and Catchpoole, “Spanning the
genomics era: the vital role of a single
institution biorepository for childhood
cancer research over a decade.”,
Translational Paediatrics, 4(2), 93-106,
2015.

21. Biospecimens Contributed per Project
• Consistent supply of samples through out the years
• Value of collection over time is evident
• 61% of Tumour Bank samples were studied along side samples collected from other
sites
• 39% the Tumour Samples made up the majority portion of samples studied.
• 11% of project, Tumour Bank samples represented but a few – indicating the rare
disease being studied..

22. Contribution to Knowledge
Publications
• 40+ publications in genomics research.
• Average impact factor = 7.58 (75% >5)
• 76% from International researchers.
>9.0
6-8.9
4-5.9
2-3.9
<2

23. Acknowledgements
Tumour Bank Team
Dr Li Zhuo
Aedan Roberts
Aysen Yuksel
Natalie Gabreal
Chris White
Oksana Markovych
…..rest of CCRU and CHW.