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Donation of tissue, blood and health information to the Victorian Cancer Biobank (VCB) is a gift and we are very grateful to all patients who consent to donate. Patients who wish to participate in research are given a detailed Patient Information Sheet and a Tissue Bank Consent Form to complete before banking tissue banking begins. If you do not wish to donate samples for research this will not affect your routine care in any way.

Patients who consent to donate samples and subsequently change their mind can withdraw consent at any time by contacting the VCB. Any samples in storage and dispose of them appropriately. If consent is withdrawn after more than four months, we may not be able to recall samples that have already been issued to researchers.

The VCB does not disclose any personal information, which can identify you. When researchers are provided samples, the biospecimen is labelled with a unique number or code so no one individual can be identified by their samples.

The Human Tissue Act prescribes the VCB Tissue Banks the collection, storage and issue of biospecimens to cancer researchers have been ethically approved at all of our collection sites.

Ethics

The Victorian Cancer Biobank is committed to ensuring that the collection of research biospecimens does not interfere with patient care and that the privacy and confidentiality of all volunteer donors are maintained.

Informed consent for tissue collection and research use is obtained from all patients. The VCB and participating healthcare institutions comply with all existing Australian federal, state, territory and institutional requirements pertaining to the participation of patients in research as well as the collection and use of research biospecimens and accompanying clinical data.

Collection of research biospecimens and associated clinical data has been approved by the research ethics committees at participating healthcare institutions. All research applications for biospecimens and clinical data must be accompanied by research ethics approvals of the research study and are subject to further review and approval by an internal Tissue and Data Review Committee (TARC).

The TARC is comprised of volunteer committee members with expertise in pathology, clinical science and translational science who review research proposals to ensure best use of VCB biospecimens.

All biospecimens and associated clinical data are de-identified so that a patient’s identity is accessible only to VCB authorised staff. Identifying information is not disclosed to any recipient medical researchers.

The VCB biobanks are audited by annually by local ethics committees.

FAQ

What is the Victorian Cancer Biobank?

The Victorian Cancer Biobank is a collection of blood and tissue samples, taken from healthy individuals or patients diagnosed with cancer or at risk of developing cancer. It also includes some information about the health and treatment of the donors.

Samples and information from the Biobank are available for research into cancer including its causes, development, diagnosis and treatment. The overall aim of the Biobank is to improve our knowledge of cancer and cancer-related diseases as well as our ability to manage cancer in the future.

The Victorian Cancer Biobank is a not-for-profit consortium or network of Tissue Banks, supported by The Cancer Council Victoria and the Victorian Government. It has been established to increase the collection of normal and cancer tissue and support the sharing of tissue amongst researchers located in a number of institutions and organisations.

What will the tissue, blood and information be used for?

The aim of the Biobank is to build up a large collection of cancer specimens, linked to medical information about individuals with cancer, that can be used for future research.

Researchers from within Australia or even overseas can apply to the Victorian Cancer Biobank for biospecimens and information to use in a cancer research project. Before it is provided, an impartial panel of scientists and doctors must agree that the project is scientifically worthwhile and a Human Research Ethics Committee must approve the project, having considered the interests of donors to the Biobank.

Because information and materials stored in the Biobank are collected for future research, it is not possible to say exactly which projects your specimens may be used for. However, only projects that investigate the causes of cancer and /or develop improved methods for the detection, diagnosis or treatment of cancer will be approved.

What will happen if I agree to take part?

Normally, when a surgeon removes tissue it is sent to a Pathology laboratory where a Pathologist examines it. Representative sections of the tissue specimen are taken and preserved in paraffin wax. The Pathologist examines the tissue under a microscope then prepares a report that is used to plan future treatment. Tissue that is not needed for this process is usually discarded. In most cases it is this tissue that would be destroyed that is banked.

If you agree to participate, the Pathologist may give the Biobank a small sample of cancer tissue and some of the normal surrounding tissue that is not needed to make your diagnosis. However, there is no guarantee that any of your tissue will be taken for biobanking. It is up to the Pathologist to decide. If there is any excess tissue it may be banked fresh or stored frozen or preserved in paraffin wax for future research.

We would like to collect a small amount of blood (25-50mls or approximately 2-4 tablespoons) to match with the tissue. If possible this will be collected at the same time as other routine blood tests.

We would also like to ask you some questions and gather information from your health records relevant to your cancer that may be useful in research. This information may be obtained from pathology reports, medical records or cancer registries and will include your treatment and progress over time.

If I agree, what exactly will the Victorian Cancer Biobank collect?

Fresh normal and cancer tissue
Permission to use tissue stored in paraffin wax blocks
A blood sample
Information about your health relevant to cancer

Are there any risks?

There are no physical risks in collecting tissue for the Biobank that are additional to the risks of your operation. Only tissue that is not needed for your treatment will be collected for the Biobank. No additional tissue will be taken for research purposes.

Collection of a blood sample can sometimes cause local pain and bruising. All procedures will be carried out by suitably qualified staff and your welfare is their priority.

The results of research performed on your tissue are intended to improve our understanding of cancer and to provide general benefit to cancer patients.

As research can often take many years, it is probable that there will not be any information from research conducted on your tissue that will have specific relevance to your health. However, if information with health implications for yourself or your family becomes available as a consequence of being a Biobank donor, the researcher is required to inform the appropriate Human Research Ethics Committee and the Biobank. The committee will examine the research data and decide whether or not it may be in your interests for you to be contacted. If this knowledge is of medical significance to you and/or your family this can be communicated to you, if you choose, via your doctor. In this case, it is important that you supply up-to-date contact information to the Biobank.

If any discoveries are made using Biobank materials that can be commercialised and generate money, a proportion may be returned to cancer research. However, there will be no money returned to tissue donors or the Biobank.

Do I have a choice?

The decision to donate to the Victorian Cancer Biobank is entirely up to you and your treatment will not be affected in any way by whether you decide to participate or not.

If you decide to donate to the Biobank and later change your mind, just let us know.

Your information and materials can be removed from the Biobank if you wish, or if you prefer, materials already collected can be retained in a fully non-identifiable form. It will not be possible to remove materials from the Biobank that have already been used for research.

What about privacy and confidentiality?

To protect your privacy, only authorised Biobank personnel will have access to your personal information. When materials or information are released to researchers they will be labelled with a unique number only. Researchers will not be able to find out who you are unless you specifically allow the disclosure of your personal information to particular researchers.

How can I donate tissue to the Biobank?

If you would like more information about the Victorian Cancer Biobank or if you are interested in participating, then please contact us. We can arrange for a Biobank representative to discuss the detailed Patient Information Sheet with you or to assist with the completion of the Patient Consent Form.

Testimonials

The VCB was engaged to assist with collection of thyroid tumour tissue, RNA and DNA extraction from this tissue and collection of (de-identified) clinical data related to the samples. I was very satisfied with the service provided by VCB who were able to provide thyroid tumour tissue from multiple hospital sites in a timely fashion, to assist with RNA/DNA extraction and to gather relevant data for clinical correlation. VCB were critical in achieving the outcome as they were able to coordinate tissue collection across multiple hospital sites (with a view to achieving target numbers of tumours). This process would have been very difficult if not impossible without a centralised body to coordinate it. In addition, VCB assisted greatly with DNA/RNA extraction using established protocols and systems with good quality control. They provided the desired product with an accompanying quality report – this was a huge time saver for me as a researcher, provided me with confidence in the material I was using and allowed me to focus on the critical parts of my project. In addition, gathering clinical data from multiple hospital sites would not have been possible without a centralised body such as VCB who were able to find the relevant information and provide it in a de-identified form to protect patient confidentiality while providing valuable data for research.” "Mutation profile of differentiated thyroid tumours in an urban Australian population", published in Internal Medicine Journal 2014

Research X

The VCB represents an irreplaceable resource for cancer researchers like myself. Access to tumour tissues and clinical data is vital in many areas of cancer research. Because of changes to the ethical requirements for the collection and use of human sample it is often not feasible for individual research groups to access, collect and store human samples. VCB handles all these requirements which make tissues available to researchers whilst protecting the privacy and rights of patients. Many clinical studies require access to a large number of samples in order to draw statistically valid conclusions. Even with common tumours, collecting samples and associated clinical data can take years and is beyond the resources of most research groups. In our own case we used samples from >100 patients in a study of the role of three different genes in the progression of colon cancer. The availability of the tissue samples supplied as microscope slides ready for use, access to the clinical data plus expert opinion on the stage and grade of each tumour sample reduced the time to complete this study from years to months. In addition having a centralised repository means that sample are processed and stored under identical protocols making comparing studies from different research groups easier.

Senior Research Fellow, Western Health and Honorary Research Fellow

University of Melbourne

VCB has accurately and swiftly aided me to obtain human tissue and plasma samples for biomarker studies. VCB played a critical role in the viability of my ongoing study, since VCB was one of the few biobanks having 200+ matched paired plasma/tissue samples from NCSCLC patients available. Guided by the excellent help of VCB, Ethical approval and access to these samples was easy and well- coordinated. Specifically, the possibility for direct communication with the personnel collecting, sectioning and shipping the materials from Melbourne to Utrecht, The Netherlands and Boulder, CO, USA, was of vital importance to the success and high quality of my research project. I would strongly recommend funding of VCB to allow continuation of their activities.

Principal Scientist

Utrecht, The Netherlands

The Biobank resource represents essential infrastructure to enable clinician-researchers such as myself to study cancers, which will lead to new insights into cancer biology that while drive improvements in patient care. It continues to be a worthwhile initiative and I support the need for longer term funding to provide security and enable longer term planning initiatives by the VCB. The ability to source tumours from multiple different hospital sites has been particularly helpful in enabling me to obtain adequate numbers of cases for rarer tumour types. I would be interested in providing further pathologist assistance to help the VCB collect rarer tumour types to enable these tumours to also be studied. Funding targeted at providing support for pathology trainees to get further involved with VCB projects would also be highly desirable, as Biobanks should be an integral part of the modern anatomical pathology lab.

Anatomical Pathologist

Austin Health

The biospecimens processed and/or collected by the VCB has been crucial to a number of concurrent projects that are investigating the role of circulating tumour DNA as a biomarker in colorectal cancer. Over the past 4 years, my research team at the Walter and Eliza Hall Institute of Medical Research has received over 8,000 biospecimens from over 300 patients diagnosed with colorectal cancer; a recruitment rate that could not have been possible without a resource like the VCB. The rapid collection of high quality blood specimens linked to clinical data, has enabled us to explore the clinical utility of blood biomarker in the management of colorectal cancer patients. These translational research projects have resulted in multiple abstracts and presentations in National and International Oncology meetings. Because of the VCB’s open-resource policy, my team has been able to attract research funding from Victorian Cancer Agency and NHMRC. The professional work by dedicated VCB staff continues to be a major cornerstone of colorectal cancer research in Victoria and is a very important asset to the community.

Clinical Research Fellow

The Walter and Eliza Hall Institute of Medical Research

I was approached by the VCB to participate in a research project involving colonoscopies whilst at Box Hill Hospital. After having the study purpose and requirements explained to me, I agreed to participate by having a one off blood sample collected. I also answered a questionnaire that the girl provided. I think the VCB was an important part of the process as they explained to me that the VCB help to organize the sourcing of patients and coordinate the collection of my sample to be sent to the research project. The researchers are I believe interstate, so the VCB being here on site enabled me to have the opportunity to help research into medical science. I guess if the VCB had not been in operation then I personally would not have had the opportunity to be part of the study. I like the idea of my sample being able to help others in the future.

Donor Y

When I was first diagnosed with cancer in 2007, I never thought about participating in medical research until I was approached by the Victorian Cancer Biobank. When I learned that I had to have surgery to remove a large tumour from my parotid gland, all I wanted was for the tumour to be removed and hopefully have a full recovery. I didn't think or care about what happened to the tissue once it was removed. However, once tissue banking was explained to me, I never imagined the benefits that could result from donating tissue that was left over. I never knew that tissue and blood could be of such value to so many researchers. I had no idea the vaccines against cancer could be developed from studying tissue, or that drugs could be developed to target specific kinds of cancer. I have been disease free now for over 8 years and if it were not for government funded programme like the VCB I would never have equated the treatment options I received to people who may have contributed to cancer research in the past. It was a devastating experience being told I had cancer, so if my small contribution of tissue adds to the general pool of knowledge to find better treatments or cures for other cancer patients, then I am grateful that an organisation like the VCB existed. The VCB made it easy for me to contribute to the public good, and has given me a feeling that I could be making a difference.