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PARTICIPATE IN RESEARCH

THE 'GIFT OF HOPE' BRAIN DONOR PROGRAM

About the Brain Donor Program

Schizophrenia is a uniquely human disease and neuroscience research into this condition can only be achieved with the help of people willing to donate. 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 'Gift of Hope' Brain Donor Program was initiated 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. Anyone 18 years and over can donate their brain, and thereby play a vital role in discovering the causes of this seriously disabling illness. As of March 2007, over 400 volunteers have joined the 'Gift of Hope' program.

People with schizophrenia and allied disorders are encouraged to donate, as well as those without any history of mental illness. By having access to brain tissue from these two groups of people, researchers aim to discover more about the biological and functional differences which cause the disease and its associated symptoms.

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 and allied disorders. The following brief examples describe a small sample of some recent projects that have used human brain tissue and their findings:

Discovery of significant alterations to cannabinoid, muscarinic, glutamate and serotonin receptors in the cingulate cortex, a brain region suggested to be a site of primary pathological change in schizophrenia. The relationship and interaction between these multiple receptor systems is under further investigation.

Our Beta Imager at Wollongong University is the only one of its kind in the Southern Hemisphere. This image shows abnormal numbers of cannabinoid neuroreceptors (red tint) in a postmortem brain tissue sample from a schizophrenia subject.

Discovery of significant differences in the distribution of tachykinin NK1 receptors between cases of schizophrenia and normal controls by the Institute's University of Newcastle team.

Preclinical models suggest a role for tachykinin NK1 receptors in the treatment of schizophrenia. This image shows increased numbers of NK1 receptors in the prefrontal cortex in schizophrenia.

The University of Sydney neurobiology team found altered levels of GABA receptors and transporters in the prefrontal cortex and superior temporal gyrus of schizophrenia subjects compared to controls. Abnormal GABA neurotransmission may account for symptoms such as debilities in speech, movement, emotion, memory and attention.

GABA transporters (the darker spots) detected in a sample area of brain tissue from the prefrontal cortex. As the brain’s major inhibitory system, GABA abnormalities may play a key role in producing some symptoms of schizophrenia.

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.

As part of the enrolment process the staff will talk to you about the program and ask you to participate in a mental health assessment, and possibly an MRI brain scan. All information gathered will be kept strictly confidential.

After your enrolment, we will make contact with you every year to see whether you have any concerns or questions. To develop a comprehensive profile on each donor, we will also ask you to repeat some of the assessments at regular intervals.

The assessments and brain scan are part of what makes tissue from the program so valuable to researchers. At the time of death the information from the assessments can be combined with the knowledge gained from the research using brain tissue. We hope that in this way new discoveries will emerge.

Being a donor means that when you die you leave the unique gift of your brain tissue for research into the causes of schizophrenia and allied disorders. To help you reach a decision about whether or not to become a donor, we will be happy to supply any information you need, and to discuss any aspect of the program with you.

There are a very small number of medical conditions that make brain tissue unsuitable for donation. These include, but are not restricted to, a recent stroke, some forms of epilepsy or a major infectious disease.

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.

Next of Kin

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 Happens When I Die?

When you die, we will arrange to have the brain tissue removed from the body and the body returned to your funeral director. There will be no interference with funeral arrangements, and no costs will be incurred.

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 and allied disorders.

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. Indeed, people have commented that the program has offered some comfort.

Enrol Today

Please enrol by phoning (02) 9295 8398, or by completing the on-line enrolment form.

Please note that currently only residents of NSW and the ACT (Australia) can enrol on the 'Gift of Hope' Brain Donor Program.

How do I Get More Information?

Contact the 'Gift of Hope' program on (02) 9295 8398.