Portrait of Prof Olivier Piguet

Carers, Patients and Volunteers


Research participation

This section explains which type of assessments are routinely used and how you can help us with our research.


How can you help us?
Patients with frontotemporal dementia:
We are keen to enrol patients into a range of studies which involve patients at different stages of the disease. We are also keen to see their carers.

For further information, please contact FRONTIER by calling Sarah Homewood, on (02) 9399 1734.

Healthy volunteers:
In order to understand any changes that occur as a result of brain diseases such as dementia, it is necessary to compare patients with FTD to healthy adults of a similar age and background. Therefore, we are looking for volunteers. If you are interested, you will be asked to complete pencil-and-paper tasks to assess memory, language and other thinking abilities, as well as some questionnaires. You may also be eligible to have a scan of your brain.

For further information regarding research participation, please email frontier@neura.edu.au or contact Nathan Bradshaw on (02) 9399 1154. We look forward to hearing from you.


What’s involved in testing?

You may be asked to participate in one or all of the following investigations:

Clinical Interview
During the clinical interview, we will be asking you about your medical history, education and occupational background. You may also be asked to complete some questionnaires

Cognitive Assessment
The cognitive assessment comprises tests of memory, language skills and thinking abilities. Testing is conducted at Neuroscience Research Australia or done in your own home if this is more convenient.

Brain Imaging
Brain imaging is carried out using a Magnetic Resonance Imaging (MRI) scanner. MRI is painless and non-invasive and generates high quality brain images. The procedure is performed at our research institute (Neuroscience Research Australia – NeuRA) and takes 45 minutes to complete.


Brain donation
Brain donation assists research that will benefit many people’s lives.
What is Brain donation?
Brain donation is when a person and their family decides to donate their brain for medical research following their death. It is a very worthwhile choice as brain donation is fundamental to advancing the understanding of neurological diseases.

Once the brain has been obtained, it is taken to the Sydney Brain Bank at Neuroscience Research Australia (NeuRA), a cooperatively managed research resource facility of three institutions – NeuRA, the Australian Brain Bank Network (ABBN) and the Faculty of Medicine, University of New South Wales. There the brain undergoes a thorough neuropathological examination to determine a final diagnosis. This information is provided to the donor’s next-of-kin and medical practitioners.

Why is brain donation important?
In order to develop effective interventions for people with FTD, tests to identify the type of cellular changes occurring in the brain need to be developed, especially for those with the initial symptoms of FTD where treatments would be of the greatest benefit. At present the changes in the brain can not be predicted by either the type of symptoms a person has, or by their genetic profile. The only way to determine the cellular changes at present is by diagnosis at brain autopsy.

Ultimately our goal is to find a cure for these devastating conditions. Our current research goal is to develop an easily identifiable biological marker (a biomarker) that will tell us the type of cellular changes occurring in the brain of each patient with FTD. In order to do this we will be screening blood from people with FTD for a broad array of cellular markers such as those proteins found to accumulate in the brain, and other molecules associated with cell degeneration. For successful development of these biomarkers it is essential that brain tissue be obtained to confirm the diagnosis and elucidate the cellular changes that are associated with FTD.

How can brain donation help research into frontotemporal dementia?
There has been considerable progress in understanding the causes of frontotemporal dementia (FTD) and related disorders over the past decade with most advances having come from the careful study of brain tissue. Unlike diseases of other organs of the body (such as the liver, gut or kidneys) which can be readily biopsied in life, for brain diseases we have to rely on post mortem tissue, which has been donated by patients or their families.

Unlike other neurodegenerative conditions like Alzheimer’s disease, people with FTD may have a number of different cellular changes in their brain. These various cellular changes cannot be distinguished during life and instead, diagnosis is achieved by careful examination of the brain following autopsy. Both neurons and their supporting cells (called glia) are damaged in FTD. There is death of these cells and the build up of proteins in the cell can be identified under the microscope.

Work on the neuropathology of FTD is contributing to the development of disease modifying treatments with the ultimate goal of curing these devastating conditions.

Why consider donating brain tissue?
Brain donation after death is the most precious and enduring gift to research that patients or their families can make. There is a real shortage of brain tissue for scientists, particularly from patients who have been diagnosed with FTD or with similar clinical condition.

Who can register with the FRONTIER Brain Donor Programme?
Our brain donor programme concentrates on various neurodegenerative conditions and also unaffected people. People who have been diagnosed with FTD are invited to consider registering to be a brain donor. It is also important to obtain tissue from people without this disease for comparison. Sometimes relatives are also interested in brain donation.

Unfortunately not everyone can register. People who have an infectious disease such as HIV Hepatitis B, Hepatitis C, or Creutzfeldt-Jakob disease are unable to participate in the programme.

What does becoming a brain donor involve?
Making the decision to donate tissue after death is a very personal one. We recommend that the decision be discussed with family members prior to registration, so that all family members understand the person’s wishes. After consideration and discussion, registration forms are completed with the brain donor programme at FRONTIER. Information concerning a person’s medical and family history will be required.

When can brain donation occur?
The brain is removed as soon as is possible after death.

How much of the brain is donated?
The whole brain is removed by autopsy. This is different from a biopsy where only a sample of tissue is removed.

What happens to the tissue?
The brain is treated with the utmost care and respect by the Sydney Brain Bank staff at NeuRA.

Some of the tissue is frozen so that it can be used for DNA extraction or biochemical studies. The remaining tissue is fixed in formalin to preserve it for microscopic examination. This information allows comparison between DNA and tissue findings as well as tissue diagnosis and typing.

Tissue samples are processed and held at the Sydney Brain Bank where scientists throughout Australia or overseas may access the tissue for ethically approved research projects

How is a brain removed? How does it affect the look of the person?
The removal of organs and tissue is no different from any other surgical operation, and is performed by a highly skilled scientist/pathologist. The donor’s body is always treated with dignity and respect. The donation of a person’s brain does not alter the physical appearance of the body, nor does it affect funeral arrangements.

How will the information be used?
It is possible that the results of the research may lead to discoveries which give a better understanding of FTD, improve methods of diagnosis, and result in treatment options for people with FTD. The research outcomes may be published in scientific journals or presented at national or international conferences. In all cases, information will be provided in such a way that the donor cannot be identified.

How is brain donation different from the Australian Organ Donor Register?
The Australian Organ Donor Register gives people the opportunity to donate tissue for transplantation.

The FRONTIER Brain Donor programme is different. Donation is only for scientific research purposes. While organ donors may also become brain donors, separate permission is required for brain donation for scientific research.

Are there any costs involved?
There is no fee for brain donation. Any costs are incurred by the Sydney Brain Bank.

For further information about Brain Donation please contact us at: Frontierbiomarkers@NeuRA.edu.au

Associated PDFs FRONTIER Referral criteria

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