What is the Alfred Brain Tumour Bio-databank?
The Alfred Brain Tumour Bio-databank is a collection of samples and associated health information to use for research, taken from consenting participants who have been given a radiological diagnosis of a brain tumour and have scheduled brain surgery.
What is the purpose of the Alfred Brain Tumour Bio-databank?
This Bio-databank is an important resource for clinicians to improve the understanding of brain tumours and to help find better ways to prevent or treat them.
What does participation in the Alfred Brain Tumour Bio-databank involve?
If you wish to participate, you will be given a detailed Patient Information Sheet and a Consent Form to complete before banking tissue begins. Your participation is voluntary. You will be able to indicate which of the following samples you would like to donate:
- Brain 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 collected at the same time as routine blood tests, if possible.
- Cerebrospinal Fluid (CSF), if it is part of your normal treatment.
If you agree to participate, you are giving permission for this Bio-databank to collect relevant health information from your medical records. The information collected could include your education, employment status, lifestyle factors, details about your operation, diagnosis history, pathology results, seizure history, medical history of yourself and your family, MRI (magnetic resonance imaging) and PET (brain) scans.
You may also be asked to complete questionnaires about your health with a member of the research team.
What are the possible benefits of taking part?
You will not directly benefit by taking part in this Bio-databank. Your participation will contribute to improving our understanding of brain tumours and help improve health outcomes for future generations.
What if I change my mind and don’t want to participate?
Even after your samples and health information have been collected, 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 some of your tissue or blood samples have been provided to a research project, it will not be possible to retrieve these samples. Research that has been published cannot be deleted or discarded.
What are the possible risks and disadvantages in taking part?
Having a blood sample taken may cause some discomfort or bruising. 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 given my consent to participate?
If you consent to complete questionnaires about your health before and after your operation, these will be completed whilst you are in hospital and at your routine clinic follow-up visits.
What will happen to my samples?
The samples collected from you will be 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.
How will my privacy be protected?
Any personal information collected about you by the Bio-databank will remain confidential.
It is common in health and medical research for international and interstate researchers to collaborate. If you agree to participate, your samples and associated information may be sent interstate or overseas for the purposes of collaborative, ethically approved research. This will be done in such a way that you cannot be identified.