Brain Donor Program

About Brain Donation

Schizophrenia is a uniquely human disease and neuroscience research into this condition can only be achieved with the help of people willing to assist. There is a great need to study human brain tissue to gain information about schizophrenia; therefore the Schizophrenia Research Institute has given high priority to collecting, storing and providing tissue to support research.

The Institute initiated its Brain Donation Program in 1998. By building up a database of people willing to donate their brain after death, we are developing a resource of well-characterised tissue that offers unique opportunities for schizophrenia research. By having access to brain tissue, researchers aim to discover more about the biological and functional differences which cause the disease and its associated symptoms.

Who Can Volunteer?

This program can only enrol volunteers aged 18 years and over from the Sydney metropolitan area, the Hunter and Illawarra regions in NSW.

Donors can be people with schizophrenia, schizoaffective disorder or healthy controls, who have also joined the Australian Schizophrenia Research Bank. 

There are a very small number of medical conditions that make brain tissue unsuitable for donation. These include, but are not restricted to, major infectious and neurological diseases or head injury with loss of consciousness.

It is important that your next of kin is aware of your decision to become a donor. If you’re unsure about this, a representative of the program is available to talk to you and your family. Next of kin usually understand and support a decision to become a donor.

What’s Involved in Becoming a Donor

The staff involved in the Brain Donor Program are mental health professionals whose role is to help you with all aspects of being a donor.

The first step is to enrol with Australian Schizophrenia Research Bank. This process will involve the completion of a pre-screen to ensure that you are suitable for brain donation for research.

Donors that meet eligibility criteria will be sent a ‘consent kit’ that contains detailed information on the Using our Brains program and consent forms. Consented donors will be contacted annually to update their contact, medical and lifestyle details. All information gathered will be kept strictly confidential.

Being a donor means that when you die you leave the unique gift of your brain tissue for research into the causes of schizophrenia. To help you reach a decision about whether or not to become a donor, the Donor Liaison Officer is happy to discuss any questions you may have about the Using our Brains program, becoming a donor or the process of donation at time of death on (02) 9351 2410.

The Decision to Donate

You are encouraged to take your time reaching a decision about whether or not to become a donor. This is because the decision is a deeply personal one, and of great importance. Of course, any time you wish to withdraw from the program, you can simply complete the Withdrawal of Consent section on your Consent kit and send it to us.

At the Time of Death

At the time of death, a member of the Using our Brains program will contact your Next of Kin to facilitate the donation. There will be no interference with funeral arrangements, and no costs will be incurred. We understand that the event of death is a difficult and emotional time for those left behind, and will ensure that donation will not add to the stress.

We are aware that making the decision to donate brain tissue after death is a very personal one, and assure you that the Institute will use all donated tissue for the maximum benefit to research into schizophrenia.

What Kind of Research?

Research projects using human brain tissue are conducted regularly throughout Australia and internationally by leading neuroscience research centres. Researchers are able to request donated tissue for approved research projects investigating schizophrenia.

Enrol Today?

Please enrol by completing the on-line enrolment form.

Donors can be people with schizophrenia, schizoaffective disorder or healthy controls, who have also joined the Australian Schizophrenia Research Bank. 

How do I Get More Information?

Please visit the Using our Brains web site, contact the program on (02) 9351 2410 or via email.

Page last updated: 11:26  5 April 2013