What is involved in becoming a donor?
If you decide to become a brain donor, after an initial prescreen, you will be sent a consent kit that contains all information and consent forms. It includes a detailed Self Report questionnaire to gather valuable information on lifestyle and general health issues. You will be asked to participate in neuropsychological assessments (about 1-2 hours) that test memory and language skills. We will contact you every few years to find out if your health and lifestyle has changed.

Will I need to have an MRI?
You may be asked to participate in a voluntary MRI brain scan however this is not compulsory and can be discussed further with the Clinical Assessment Officer after you have completed the consent and assessment process.

What is meant by brain tissue?
We mean the whole brain. The brain is a very complex structure and it is necessary to look at all the different parts of the brain. In some neurological conditions the spinal cord is also essential for the confirmation of diagnosis and research. If this is specifically stated on the consent form, consent to donate spinal cord can be given.

Why is brain tissue needed for scientific research?
Many conditions such as bipolar disorder, depression, schizophrenia, motor neuron disease, multiple sclerosis, alcohol related brain disorders and other neurological and psychiatric conditions affect only humans. Brains from people affected with these illnesses are essential for research devoted to finding treatments and cures.

Is tissue from normal brains needed?
Yes. Progress can be made towards finding the cause of neurological and psychiatric conditions if researchers can compare brains from those affected with brains from those who were not affected by such conditions. Normal brain tissue can also be used to study ageing of the human brain. Normal brain tissue is known as 'control' tissue. Unaffected spouse or family members are encouraged to consider registering as donors of tissue that may be used as controls in the research process.

I am an organ donor. Can I still donate my brain?
Yes. There is no interruption to the organ donation process and this will preclude the brain donation. Neither procedure will be effected by your decision to be an organ or brain donor.

I am a full body donor (or whole body donor). Can I still donate my brain?
No. It is currently not possible to be both a full body donor and brain donor. This is due to the embalming procedure used when donating your whole body to research.

I have an infectious disease. Can I still donate my brain?
No. People with infectious diseases cannot be donors for the safety of staff. These include Hepatitis B and C, HIV and AIDS, and Creutzfeldt-Jakob disease.

Is there any cost involved with donating my brain?
No. The brain bank will cover all costs involved with transportation of the body for the procedure and all costs associated with the brain donation (including neuropathological diagnosis). However, all other aspects of the funeral arrangements remain the responsibility of the family.

What does a brain donation involve?
After we have been notified of your death we will arrange transport to a registered hospital or forensic institute mortuary. The brain (and sometimes spinal cord, if consent has been given) is removed at an autopsy by a trained technician and the post mortem examination is supervised by a pathologist. Ideally the procedure should take place within 24 hours after death but can be performed up to 60 hours after death. The deceased is treated with the utmost respect, and brain removal occurs in such a manner that the body is not disfigured. Brain donation does not require a full autopsy, however brain donation can take place as part of a full autopsy, when appropriate.

Will the brain donation affect the funeral arrangements?
The post mortem procedure does not interfere with the normal course of events associated with a funeral. The donation process only takes a few hours and the body can usually be returned to the family within 24 hours. Special arrangements can be made to comply with religious beliefs.The post mortem does not affect the ability to have a viewing or open casket funeral as the brain is removed in such a way as to minimise visible marks.

What happens to the brain tissue?
The brain is processed in two ways to allow maximum information to be obtained and to ensure the tissue is usable in research for many years to come. Half the tissue is frozen and is used for research. The remaining tissue is fixed in formalin and allows for both neuropathologic diagnosis and research.

What research is performed on the brain tissue?
We cannot advise you as to the exact nature of this research as researcher's 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 and clinical information after obtaining approval for their research projects from their institutions Human Research Ethics Committee and the relevant state Scientific Advisory Committee. This is to ensure the tissue is used ethically and is only provided to feasible research projects with scientific merit.

If you become a donor will this information be private and confidential?
Yes. The personal and health information of all registered donors is held securely in password-protected computer files and in locked files at a separate location to ensure confidentiality. Once the donation has occurred, the tissue is stored securely at a one of our Brain Banks and is identified only by a unique identification number. Researchers have access to selected tissues and specified clinical information only through the unique identifier. No donor is ever identified by name in any publications or presentations that result from the research. The NSW Tissue Resource Centre is committed to protecting the donor and their families privacy. You have the right to access any personal information that we hold about you. You can ask to correct, update or amend personal and health information, such as your current address.

What if you decide to withdraw after giving consent?
You are free to withdraw your consent at any time. Your decision will be fully respected and no questions will be asked. Your decision will not affect your relationship with any medical institute or area health service.

Does my doctor need to know that I intend to donate my brain upon my death?
Your general practitioner (GP) may be asked to complete the death certificate at the time of death. If you volunteer for an MRI you must indicate a GP to receive the report. Your GP will also be the main contact to provide any additional medical information required post-mortem. Therefore it is important that your doctor is aware of your wish to donate your however it is not compulsory.

How long will the tissue be stored and how will it be disposed of?
The donated tissues are stored indefinitely. They are preserved in such a way that ensures their continued use in research. If we have to dispose of tissue that is no longer suitable for research it is done in an ethical and respectful manner, in accordance with prevailing national regulations.