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A review of cancer-related biobanks in New South Wales

Research updates

Issue 2, December 2009

This report presents an overview of the scope and nature of tissue banking in NSW by mapping their geographic location across the 12 cancer research hubs in NSW, as well as examining their governance arrangements.

Through increasing knowledge and awareness of NSW cancer biobanking activities, the ultimate goals of this review are to assist in:

• assessing the current level of investment in tissue banking and identify future resource requirements
• improving researcher access to tissues collected in a range of cancers
• improving efficiency and reducing duplication of administrative processes
• building capacity that is cost-effective and sustainable.

The project included a review of international and national biobanks, with a focus on organisational structures and governance models. It also included a two-phase survey within NSW to firstly identify active biobanks and then to understand in more detail the current operational and governance structures of these banks.

International models for biobanking

The majority of international biobanks reviewed were operating as part of a consortium or network where individual banks work together to develop consistent approaches to biobanking and, in some instances, the pooling of resources. Less frequently, the international banks reviewed fell within the categories of either individual biobanks (with one or multiple collection sites) or population-based epidemiological biobanks.

The use of standard operating procedures was common among all biobanks and there are many international guidelines on procedure development for consideration, such as the National Cancer Institute Guidelines in the US, the Confederation of Cancer Biobanks Guidelines in the UK and the International Society for Biological and Environmental Repositories Guidelines in Europe.

Australian biobanking

Australian biobanks are constituted in a similar manner and their operations also require ethics and scientific advisory committees' approval. The Victorian Cancer Biobank provides an example of a consortium model for clinical biobanking where four separate clinical biobanks are linked through one over-arching management committee. A slightly different approach has been taken in Western Australia, where tissue banking is embedded within certain pathology services and core data management and linkage platforms are being developed to ensure consistent and efficient management of research studies involving biospecimens. The Western Australian approach is wider than just cancer and aims to maximise linked datasets to answer epidemiological as well as clinical research questions.

The Australasian Biospecimen Network (ABN) is an example of a network approach that aims to assist researchers locate biospecimens through an online facility that allows searching of multiple biobanks at one time. It also provides a forum to address technical, legal/ethical, and managerial issues relevant to human biospecimen repositories within Australia and New Zealand.

Cancer biobank locations in New South Wales

Within NSW, 23 tumour collections were identified, 17 of which were confirmed as formalised tissue banks.

Biobank activities in New South Wales: key themes from surveys

Design

• Each of the formal biobanks in NSW gains patient consent for broad, as yet unspecified, future research with specimens at most tissue banks also being collected for specific research projects on request.
• Specimens routinely collected and stored generally include fresh frozen tumour tissue and, at most banks, matched normal tissue, blood and blood products. Several banks also store paraffin embedded specimens. DNA and RNA are not routinely extracted at most banks, but can be on request.
• The design of the biobanks in terms of single or multiple collection and/or storage sites is in large part dictated by the original intent of the bank and by tumour incidence, patient type, specific collection and storage requirements for the tumour or institution, availability and funding for dedicated tumour bank staff and storage facilities, and how to best develop expertise in tissue and data collection, storage and distribution.
• Two of the biobanks have specimen locators for researchers to search for specimen availability within a specific tumour bank and three others are members of the Australasian Biospecimen Network (ABN).

Entity status and funding sources

• All exist as non-profit organisations or as departments (or units within departments) within hospitals or research institutions.
• All but four banks rely to some extent on grant funding for their operation, with 85-90 per cent of funds generally spent on staffing.

Organisational structure and governance arrangements

• All biobanks collecting from multiple non-local geographical sites are governed in some capacity by executive or management committees or independent arm's length advisory groups. In addition, these large biobanks have other committees under this governing committee, responsible for the development of policies, procedures and operations and either have already got, or are in the process of establishing, scientific advisory groups.
• Biobanks with either single or local-only collection and storage sites are generally governed by a Biobank Committee constituted from within the hosting institution. Expert advice is sought by these committees as required.
• Where more than one biobank exists at an institution, storage facilities are often shared, yet with individual biobank committees responsible for operational issues and, in most cases, researcher requests and specimen distribution.

Standard operating procedures and data management

• Although there are some variances across the NSW biobanks, standard operating procedures are similar and/or are based on the same source (with the exception of procedures specific to a certain type of tumour or specimen not routinely collected).
• All banks had established their own databases to register basic client information and link this information to the physical sample through a coded system (generally in Microsoft Excel or Access). Clinical information and follow up data were often kept separately from the biobank database with manual searches often required to include this information with samples for researchers.
• Banks varied widely in the extent of clinical information collected and recorded and the extent to which the data was governed by data dictionaries.

Researcher access and performance measures

• Almost all biobanks interviewed have a formal researcher access policy, with most stipulating priority access for participating institutions or their affiliates and collaborators.
• Most tumour banks charge researchers either nothing or freight costs only.
• Almost all biobanks require researchers to acknowledge the biobank in any publications arising and to send copies of publications to the bank.
• Biobanks generally measure their performance by: the number of donors and specimens collected; the number of specimens accessed by researchers; and the numbers of publications arising.

Future options for New South Wales biobanking

From the review of current NSW biobanking activities, several opportunities exist for maximising the potential of biobanking in NSW. First, alternative organisational or networking models of existing biobanks could be considered. These range in complexity from minimal changes to the current arrangements and infrastructure to substantial change and re-structure. Second, core infrastructure requirements could be examined including the current role of pathology providers in tissue banking, data management and linkage platforms.

Alternative models for biobanking - Minimal change approach

• Stakeholder network with or without biospecimen locator

  Related individual biobanks could form (or join existing) stakeholder networks while retaining their current organisational arrangements (e.g. samples are still 'owned' by the individual banks and the researcher must still apply individually to each bank when samples are located). This networked structure provides a forum for working with other banks to improve consistency of approach and standardised procedures. In addition, a biospecimen locator could further benefi t researchers by increasing their ability to quickly and easily search multiple banks and/or multiple storage/collection nodes at one time for samples.

  However, there are limitations to this approach, particularly in respect to the quality and consistency of tissue samples across the network, which, in the absence of an over-arching monitoring body or mandating process, may be difficult to achieve.

• Accreditation

  Accreditation procedures across multiple banks could be implemented to increase consistency and coordination. There are significant benefits to researchers if the quality and consistency of stored tissue are increased. However, this approach would not assist in location of specimens across banks, so a biospecimen locator approach may also need to be considered.

  No changes would be required to the organisation or entity status of the individual biobanks, although there may be procedural changes required within individual banks in order to meet accreditation standards and would require financial investment from banks.

• Consortia approach

  Biobanks could also look at the option of forming a consortium, which would override their entity as individual biobanks. This would have implications on governance arrangements of individual banks and would require the formation of an over-arching body, such as a central management committee to lead the consortium. Issues, including sample storage and ownership, SOPs, funding and cost recovery, may all have to be dealt with through consensus among the members.

  This approach has the greatest potential to increase the consistency and quality of biospecimens and associated clinical and outcome data. It may require considerable investment to provide enough resources and incentive to ensure compatibility of processes and systems among individual banks.

  A consortium could be set up within NSW or could be Australia-wide. It could also be tumour-specific, restricted to certain cancers or could be general for all cancer types.

Enhancing biobanking infrastructure

• Pathology-based biobanking:

  Pathology departments play an integral role in all biospecimen banks. There are currently few well-established data linkage networks between pathology and clinical databases in NSW biobanks. Most biobanks interviewed are aiming to establish more sophisticated networks but are constrained by financial and human resources including lack of technical expertise.

• Data management and tracking systems

  As biobanking activities expand and more collaborations are established, sophisticated data management and tissue sample tracking will become essential. Software applications such as the Laboratory Information Management System (LIMS) of WAGER and the VCBs custom designed database are two examples of systems specifi cally developed for the Australian market. There are also international initiatives, such as the National Cancer Institute's caBIG and the Canadian CTRNet project which seek to establish common data-sharing platforms for biobanks. While it is outside the scope of this study to make any detailed assessment of the various tools currently available, it is clear that any further developments of biobanking collaborations in NSW should build on and learn from the experiences of the established systems, rather than duplicating these efforts.

• Data linkage and epidemiological biobanks

  The WAGER initiative also provides the basis by which Western Australia is increasing the depth of their epidemiological datasets, in addition to managing clinical samples. Most biobanks identified within NSW have been set up for clinical research purposes rather than focussing on epidemiological research questions. The Centre for Health Record Linkage (CHeReL) currently provides excellent capacity within NSW for linking existing statewide datasets and, other than Western Australia, is the only such facility in Australia. There may be an opportunity to leverage off this existing data linkage capacity.