Who is using this resource?

• The CCB is being used by a range of scientists primarily from around Australia, but also by some international scientists also studying haematological disease (ie blood cancers, for example leukaemia, lymphoma and myeloma etc).
• The resource is open to any bona fide researcher undertaking haematological health related research, wherever they might be.
• Whilst it is mostly Australian researchers working in academia that access CCB samples, the CCB hopes that the facility becomes a resource of value for scientists around the world and also for industry as we believe it is a resource of value, that can be used  to improve treatments and the health of future generations.

CCB: An ethically approved biobanking facility

• The CCB has been given Metro South Health HREC approval.
• All policies and procedures of the facility abide by the National Statement on Ethical Conduct in Human Research 2007 (Updated 2018) ('National Statement').

Confidentiality

• Participant privacy is respected.
• All samples are anonymous to researchers.
• In order to interpret the results of research on tissue samples, it may be necessary for researchers to know some other things about the participant, for example gender, age and how their disease responded to treatment.
• This helps a researcher answer questions about the disease.
• Such information is routinely collected by the participant’s health care team and is stored as part of their medical record.
• The tissue sample is stored anonymously but will be able to be linked back to the other information collected by the participant’s health care team during their treatment.
• Additional clinical information is supplied as needed to researchers, but personal identification is not.
• Identifying information will remain confidential to CCB staff.
• Additionally, no one outside the research process (eg third parties) have access to samples or results from any individual, which also protects a participant’s privacy.

Researcher projects: scientific and ethical review

• All research involving samples must first be approved by the HREC of the institution where the research is being conducted; making sure it abides by the National Statement.
• A HREC approved researcher who wishes to access CCB samples must apply to the CCB Management Committee.
• This Committee is made up of a panel of haematologists and interested professionals, who review all researcher proposed projects looking at the purpose and their scientific value.
• Samples are only provided if the CCB Management Committee is satisfied that the proposed research has met and is of high scientific and ethical standards.

Feedback

• Feedback is important to CCB.
• Whether it is about ideas or suggestions about this website, or any other aspects of the CCB, please do let the team know.

Withdrawal

• Participation in the CCB is entirely voluntary.
• There is no cost to participants, nor will there be any financial gain.
• The samples individually are of limited value.
• The choice to let CCB store tissue collected/removed at the time of biopsy(ies), and blood tests is entirely up to the participant.
• A patient’s care will not be affected by their decision in any way.
• Participants can withdraw at any time without providing a reason.
• Participants wishing to withdraw should contact their treating practitioner or contact the CCB Manager to discuss the required formal withdrawal process.

Contribute to the CCB

Samples

• Patients of the PAH or participants enrolling in a specific clinical or laboratory based study may be also asked to participate in CCB.
• Patients and participants will be provided with a Participant Information and Consent Form (PICF) and will be given an opportunity to ask questions and discuss the CCB further with their treating clinician.

Funding

• Donations to the CCB can be provided through the PA Research Foundation website by selecting ‘Cancer Collaborative Biobank’ on the drop down box for the ‘Donation Type’.

Purpose

• The purpose of storing samples is to facilitate laboratory based research into haematologic malignancies (eg leukaemias, lymphomas and myelomas, etc).
• The function of the CCB is to provide samples from patients with these diseases, for use in approved research projects—thereby facilitating a wide range of research activities.
• The ultimate goal of facilitating such research is to improve our understanding of the processes leading to the development of haematologic malignancy, factors which govern the variable response to current treatments and ultimately the development of more effective therapies for patients suffering from haematologic malignancy.

Operations

The CCB operates within Cancer Services is overseen by the CCB Management Committee—made up of haematologists and interested professionals.

• CCB Management Committee Terms of Reference (PDF, 138.52 KB)
• CCB Scientific Review Panel Terms of Reference (PDF, 225.32 KB)

The CCB operations have been reviewed and approved by the Metro South Health HREC.  All policies abide by the National Statement.

Sample types and time points

• All available CCB sample holdings are from consented participants who have been diagnosed with a haematological malignancy. Bone marrow and peripheral blood biospecimens are only obtained when a patient/participant undergoes diagnostic and/or follow-up procedures as part of their specific treatment plan.

• Wherever possible, a selection of sample types are made from the donated bone marrow and peripheral blood (see the disease/classification table below).

• Time points where bone marrow and/or peripheral blood are routinely collected on participants include: 

  • diagnosis/baseline (Dx)
  • post induction
  • post consolidation
  • relapse

• A participant may have one, some or all time points stored, and may be undergoing either standard treatment for their disease or be enrolled on a specific clinical trial.  

Disease/classification

• All participant baseline samples registered in the CCB database have a confirmed haematological malignancy and have been classified within the database according to the World Health Organisation (WHO) Tumours of Haematopoietic and Lymphoid Tissue. 
• CCB samples are standardly processed as per the tables below as follows:

• The above list is not exhaustive—other tissue sources may be collected dependent on specific research requirements (eg CSF, FFPE, saliva, buccal (cheek) cells or hair follicles).
• Processing methodologies in the CCB have been chosen to ensure highest quality for each sample type.

The above details may require refinement or clarification by direct communication with CCB staff. Please contact the CCB Manager directly to discuss further.

• When you contact the CCB, an initial database search is carried out by CCB staff. 
• This search will provide current patient and sample numbers. 
• Researchers can narrow this search to be further project specific, by requesting inclusion or exclusion criteria such as specific WHO classifications, specific time points, biospecimen and sample types, and pertinent pathology test results required.
• For further detail on specific holdings or for a more comprehensive breakdown of biospecimen /sample types available for research projects please contact the CCB Manager directly.

Contact

How do I apply for samples and associated data from the CCB?

• Step 1: Contact CCB staff to discuss samples contained within the CCB and ascertain that the CCB can fulfil the requirements of the proposed research. Please note that a cost recovery/offset charge will apply and a preliminary quote can be provided at this stage.

• Step 2: Obtain institutional support and ethical clearance for the research project. If undertaking research in Metro South Health, please review the ethical clearance and research governance authorisation of research processes.

• Step 3: Complete an application for biobank samples form (DOC, 1.06 MB). This will include confirmation of the researcher’s institutional HREC ethical clearance and the status of funding for the proposed research. The CCB will seek partial cost recovery from sample recipients. Quotes will be provided to researchers at the time of application authorisation utilising a fee schedule based on processing and storage costs, which may be scaled according to the source of the request (commercial entity vs academic). The CCB will also provide a Research Data and Materials Agreement which is used prior to dispatch.

• Step 4: Lodge the completed application for biobank samples form with the CCB either by email (scanned copy preferred) or by mail. If submitting by email please type in subject line: ‘CCB Researcher Application for Review’.  Sample requests will be processed as they are received and finalised as soon as possible.

• Step 5: Receive evaluation and recommendations from the CCB Management Committee. It is the intention of the CCB Management Committee to supply all reasonable requests when tissue samples are available to maximise the research yield from these samples.

  • The applicant may wish to lodge a grievance pertaining to applications for samples which are deemed to be duplication of existing work, or are deemed unfeasible or unsuitable by the CCB Scientific Review Panel and/or the CCB Management Committee. Please contact the CCB Manager to discuss further.

• Step 6: Samples are made available for dispatch.  The samples may undergo extraction and other quality control processes by CCB staff, once a research project has been endorsed as suitable. After this process they are dispatched without delay by courier at the expense of the end-user. Confirmation of receipt will be requested as well as a quality feedback/assessment report (provided at time of dispatch).

What are the CCB’s annual reports and publications requirements?

• Researchers are requested to submit annual project update reports and to list any presentations/publications associated with samples supplied for their approved projects within that year.
• Researchers may be publicised through both internal and external channels (via web pages, conference presentations, poster displays and multimedia displays), as well as via publication in peer-reviewed journals and/or relevant policy documents. 
• The CCB should be appropriately acknowledged with the wording (detailed within the formal application) in all presentations and publications.

What data will accompany the sample?

• Metro South Health has the potential to link samples with an accurate and complete clinical database, through the integrated electronic Medical Record (ieMR). 
• De-identified samples could be linked to de-identified information for approved research projects.
• This is an outstanding resource for researchers translating laboratory findings into clinically meaningful data.

Do I need ethical clearance?

• Yes, please see ethical clearance for more information.

How do I contribute samples to the CCB?

• Institutions and other Queensland hospitals who wish to contribute samples the CCB should contact the CCB to discuss further.
• All institutions collecting tissue from trial and non-trial patients for the CCB must have first had the CCB PICF approved by their HREC.
• Please contact the CCB to receive a copy of the PICF.