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Patients and participants

Who is using this resource?

The CCB is being used by a range of scientists from around the world studying haematological disease i.e. blood cancers e.g. leukaemia; lymphoma; myeloma etc. The resource is open to any bona fide researcher undertaking haematological health related research, wherever they might be.

Currently it is mostly Australian researchers working in academia that access CCB samples, however, the CCB hopes that researchers also working overseas and in industry will also find the resource of value, and use it to improve treatments and the health of future generations.

CCB: An ethically approved biobanking facility

The Cancer Collaborative Biobank has been given Metro South Health Human Research Ethics Committee approval.  All policies and procedures of the facility abide by the National Statement on the Ethical Conduct of Research Involving Humans from the NHMRC.

Confidentiality

Donor 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 donor e.g. gender, age and how their disease responded to treatment. This helps a researcher answer questions about the disease. All such information is routinely collected by the donor’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 donor’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 (e.g. third parties) have access to samples or results from any individual, which also protects a donor’s privacy.

Researcher projects: scientific and ethical review

All research involving samples must first be approved by the Human Research Ethics Committee (HREC) of the institution where the research is being conducted, making sure it abides by the NHMRC principles for the conduct of medical research involving human tissues. 

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 committee is satisfied that the proposed research has met and is of high scientific and ethical standards.

Feedback

Feedback is important to us. Whether it is about ideas or suggestions about this website, or any other aspects of the study, please do let us know. You can use the website feedback form at the bottom of this page – and don’t forget to tell us if you require a reply.

Withdrawal

Participation in the Cancer Collaborative Biobank is entirely voluntary. There is no cost to you for participating in the CCB, 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 your biopsy (ies), and blood tests is entirely up to you. Your care will not be affected by your decision in any way.

Participants can withdraw at any time without providing a reason. Should you wish to withdraw please contact your treating practitioner or contact the Cancer Collaborative Biobank Manager on telephone (07) 3176 5835 or by email megan.ellis@health.qld.gov.au to discuss the required formal withdrawal process.

Contribute to the CCB

Samples

If you are a patient of the Princess Alexandra Hospital or are enrolling in a specific clinical or laboratory based study you may be asked participate in CCB. You 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 your treating clinician.

Funding

If you would like to donate to the CCB please do so via the PA Research Foundation website and select Cancer Collaborative Biobank on the drop down box for the Donation Type.

Last updated 3 April 2017
Last reviewed 3 April 2017

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