DONORS

donors

What is brain donation?

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.

What does a brain donation involve?

The brain (and sometimes spinal cord, if consent has been given) is removed at an autopsy limited to the tissues being donated. Ideally the procedure should take place within 24 hours of death but can be performed up to 36 hours after death.

Why is brain donation important?

Although many advances have been made in our understanding of brain diseases over the past decade, there are still no cures for many 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.

What research will be performed on the brain tissue?

We cannot advise you as to the exact nature of this research as researchers' needs change with time and there are continuing advances in technology which affect the nature of scientific research. However, researchers will only be able to access stored tissue after obtaining ethical approval for their research projects from their institutions and the Scientific Review Committee. This is to ensure the tissue is used ethically and is only provided to feasible research projects with scientific merit.

Is there anyone who cannot be a brain and spinal cord donor?

People who have an infectious disease such as HIV, Hepatitis B, Hepatitis C or Creutzfeldt-Jakob disease are unable to become a brain donor. People who have had a severe head injury, severe stroke or are in the late stages of a neurodegenerative disease at the time of enrolment may be unable to become a brain donor, please call us on (02) 9399 1707 to discuss.

Is brain and spinal cord donation the same as tissue or organ donation such as cornea or kidneys?

No, the donated brain and spinal cord is not used for transplantation, but solely for research purposes. Therefore, separate permission is required for this type of donation.

I am an organ donor. Can I still donate my brain?

Yes. There is no interruption to the organ donation processes and this will precede the brain donation.

I am a full body donor. Can I still donate my brain?

Yes. It is possible to to be a brain donor and donate your body for education and scientific studies to Macquarie University. For further information please call or write to: T: (02) 9812 3543 E: bodydonationprogram@mq.edu.au

Will the brain donation affect the funeral arrangements?

No. The limited autopsy does not interfere with the normal course of events associated with a funeral. The limited autopsy does not affect the ability to have a viewing or open casket funeral as the brain (and spinal cord, if consent is given) is removed in such a way as to minimise visible marks.

Is there any cost involved with donating my brain?

No. The brain banks will cover all costs involved with transportation of the body for the procedure and all costs associated with the brain donation. However, all other aspects of the funeral arrangements and costs remain the responsibility of the family.

How can I participate?

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 enroll appropriate people into their studies. Each of these programs focuses on particular types of brain disorders, or looks at particular populations of people. See our 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 the NSW Brain Banks, due to ethics requirements and the need for standardised clinical information for tissue characterisation and use in research studies.

I do not live in NSW, can I still particpate?

Please contact us on +61 2 9399 1707 to discuss.

I would like to start my own brain donor program. How do I do this?

Please go to our Establishing a Brain Donor Program page for further information.