Brain donation is when a person and their family decide to donate their brain for medical research following death. Brain donation is fundamental to advancing the understanding of diseases that affect the brain. Individuals without brain diseases are also needed for comparison purposes.
Although many advances have been made in our understanding of brain diseases over the past decade, there are still no cures for the majority of these conditions. Modern brain imaging techniques, blood tests and genetic markers are helping to improve the diagnosis of brain diseases, but without understanding the changes that occur in the brain, the impact of these advances will be limited. In order to better understand and develop more effective treatments for brain diseases, studies are needed that identify the specific cellular changes occurring in the brain of people with disease compared with healthy subjects.
In Sydney, there are two brain banks for research purposes that specialise in different brain diseases; the Sydney Brain Bank at Neuroscience Research Australia (NeuRA), which specialises in neurodegenerative conditions, and the NSW Brain Tissue Resource Centre at The University of Sydney which specialises in psychiatric disorders and substance abuse. Collectively these facilities operate as the NSW Brain Banks.
Once the brain has been obtained at a limited autopsy, it is taken to one of the NSW Brain Banks. In some cases consent is also sought to remove the spinal cord during the autopsy. The tissue undergoes a thorough characterisation so that it can be used most effectively in ethically-approved research studies.
The brain banks do not accept direct enrolment of donors, instead they accept those who have given pre-consent through an existing brain donor program. There are a number of different clinical research programs that enrol appropriate people into their studies. Each of these programs focuses on particular types of brain disorders, or looks at particular populations of people. Review the brain donor programs for information and contact details for programs enrolling donors.
Unfortunately, not all conditions or diseases can be accepted. Furthermore, end-of-life or donations after death cannot be accepted through the brain donor programs, or by either of the NSW Brain Banks, due to ethics requirements and the need for standardised clinical information for tissue characterisation and use in research studies.
Please see our list of Frequently Asked Questions or contact the relevant brain donor program coordinator to discuss any questions you may have. Details of the coordinators can be found on our brain donor programs page.
If you are interested in establishing a brain donor program, please visit Establishing a Brain Donor Program.