Information for patients and families

If you agree to contribute to the Illawarra Shoalhaven Cancer Biobank, you will be asked to sign a Participant Consent Form and complete a short 5-minute questionnaire. If you undergo surgery, a small sample of tumour and surrounding tissue will then be taken from the tumour which is removed. This sample of tissue will only be collected if not required by the Pathologist for diagnostic purposes.

Bodily fluids (CSF, sputum, bile and/or other bodily fluids), may be collected for the biobank if you are undergoing a relevant procedure, as part of your treatment.

We would like your permission to collect up to four blood samples, each one approximately 40mls or 8 teaspoons. This blood will be collected, where possible, at the time of surgery or other procedures you are undergoing as part of your treatment, for example chemotherapy, immunotherapy and/or radiation therapy.

We may also collect a stool, urine and/or throat swab sample at these same time points.

We request your consent to gather information from your health records that is relevant to your cancer diagnosis and treatment. This information may be obtained from your ISLHD medical records, MOSAIQ (Cancer Electronic Medical Record), pathology reports and the ISLHD Clinical or NSW Cancer Registry.

All personal identification will be removed. This health information will be kept in a secure, password protected database on NSW Health secure servers accessible only by authorised biobank managers.

This information will only be shared with researchers who have received a human ethics approval to conduct research using the biobank samples for specific projects. No information that could identify you is shared with researchers.

There will be no cost to you, and you will not receive any payment.

Your decision to participate, or to take part and then withdraw, will not affect your routine treatment, your relationship with those treating you or your relationship with Illawarra Shoalhaven Local Health District.

Your tissue, blood, stool, throat mucosa swab, bodily fluid samples and de-identified information will be stored and made available to researchers for use in their cancer research if their project has been approved by a Human Research Ethics Committee (HREC).

No specific identifiable information will be recorded or stored with the sample. Researchers with approved projects can apply to the Biobank Scientific Advisory Committee (SAC) to request access to samples and related clinical data. If SAC approves access, the samples are transferred from the biobank to the researcher strictly for the purposes approved by the HREC for that project only.

Researchers do not have physical access to data or samples held by the Biobank.

No identifying information will be included with any samples used in research.

The Illawarra Shoalhaven Cancer Biobank is kindly funded by the Radiation Oncology and Medical Oncology Trust funds.

If you would like to contribute to assist the Illawarra Shoalhaven Cancer Biobank with vital, local cancer research, please donate via this link.

All funds will go towards equipment and consumables for the Biobank and its projects.