What does participation in SANTB involve?
When you are diagnosed with a brain tumour, you will be spoken to and given a detailed Patient Information Sheet and a Consent Form to inform you about the tumour bank. Your participation is voluntary.
If you agree to participate, you are giving permission for the SANTB to collect relevant health information from your medical records. The information collected could include your demographics, details about your operation, diagnosis history, pathology results, seizure history, medical history of yourself and your family, MRI (magnetic resonance imaging), CT and PET (brain) scans.
You may also be asked to complete questionnaires about your health with a member of the research team.
What tissue is Collected?
• Brain/tumour tissue collected during your scheduled medical procedure. Tissue that is not needed for your routine clinical care and usually discarded, is the tissue that is banked.
• Blood samples usually collected at the same time as routine blood tests.
• Cerebrospinal Fluid (CSF), if it is part of your normal treatment.
What are the possible benefits of taking part?
You will not directly benefit by taking part in the SANTB Your participation will contribute to improving our understanding of Neurological tumours and help improve health outcomes for future generations.
What if I change my mind? Can I withdraw?
You are free to withdraw your consent at any time without having to give a reason. Withdrawing your consent to participate will not affect your medical treatment in any way.
If any of your tissue has already been used for a research project, it will not be possible to retrieve that tissue. Research that has already been published cannot be deleted or discarded.
Are there risks and disadvantages in taking part?
Apart from the discomfort or bruising when having blood taken there is no risk or disadvantage. Some people may feel faint when having blood taken. Rarely, there could be a minor infection or bleeding.
Will I be contacted after I have giving my consent?
Apart from the information that is collected while you are in the hospital or during your routine clinic follow-up visits, you will not be routinely contacted.
What will happen to my samples?
Some of the sample is taken by researchers directly as fresh tissue. Some of the tissue is frozen immediately, in a liquid nitrogen Dewar and stored for an indefinite period of time. Your samples will be used for future unspecified health and medical research. If your samples are shared with researchers, the samples will be sent in a coded manner. Your personal identifiers (such as name, contact details, etc.) will not be disclosed to them. Your tissue will be given only to research projects that have appropriate scientific and ethical approval.
How will my privacy be protected?
Any personal information collected about you by the SANTB will remain confidential.
When collaborating with groups either interstate or overseas, your samples along with necessary information will be sent. However, this will be done in such a way that you cannot be identified.