DONORS

donors

The Sydney Brain Bank does not accept direct enrolment of donors. Instead, donations must come through existing brain donor programs where participants have given prior consent. These programs are linked to clinical research studies focusing on specific brain conditions or populations.

If you are interested in participating in a brain donor program, please review the programs listed below and contact the one that best matches your circumstances. Unfortunately, if you do not reside in NSW, most of the other state brain banks have closed due to funding restrictions. Please contact us on 02 9399 1707 to discuss options.

Unfortunately, not all conditions or diseases can be accepted. Additionally, donations cannot be accepted at the time of death without prior enrolment in a brain donor program. This is due to ethical guidelines and the critical need for standardised clinical assessments, which are essential to ensure the tissue can be used in meaningful and high-quality research.

For answers to some frequently asked questions, please visit our FAQ page.

Filter the donor programs by areas of research

The NSW Movement Disorders Brain Donor Program, based at Macquarie University, is for patients diagnosed with Parkinson’s disease, Multiple Systems Atrophy or a parkinsonian condition. The research focuses on understanding the brain changes that occur in Parkinson’s disease and related disorders. Participants must be willing to participate in clinical research assessments. Healthy controls who participate in the same clinical assessments can also enrol in the NSW Movement Disorders Brain Donor Program.

Based at Brain and Mind Centre, The University of Sydney, FRONTIER is a research clinic for people with frontotemporal dementia, Alzheimer’s disease and associated syndromes. Participants are typically referred by a specialist and must be able to attend the clinic in Camperdown to undergo clinical assessments.

The NeuRA Volunteers Brain Donor Program recruits individuals aged 60 or older who are neurologically healthy. This program investigates the cellular changes in the brain and spinal cord during normal ageing and in age-related diseases. The research helps improve our understanding of brain ageing and neurodegenerative conditions such as Alzheimer’s, Parkinson’s, motor neurone disease, and CTE.

If you are the spouse or relative of an individual who is already enrolled through one of other brain donor programs you may also be eligible to enrol with these programs for healthy individuals. Please call the associated brain donor coordinator for further information. Remember to inform the program of your relationship with the existing donor.

Based at Westmead Hospital, the Huntington’s Disease Brain Donor Program is for individuals diagnosed with Huntington’s Disease and their family members.

+61 2 8890 9146

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The ForeFront MND Brain Donor Program is a collaboration between Macquarie University, NeuRA, and the University of Sydney. The program focuses on understanding motor neurone disease (MND) by studying how genetic and clinical factors affect cellular changes in the brain and spinal cord. In order to develop effective interventions for people with MND, more information is required about the cellular causes and how genetic variation may affect the cellular mechanisms and thereby patterns of disease spread. Changes in the brain and spinal cord of patients with MND cannot be predicted by either the type of symptoms a person has experienced, nor by their genetic profile. The only way to determine the cellular changes is by means of a brain and spinal cord autopsy. Participants must be willing to participate in clinical assessments.

These brain donors were participants of one of the following studies:

Sydney Memory and Ageing Study 2
Based at the Centre for Healthy Brain Ageing (CHeBA), UNSW, The second cohort of the Sydney Memory and Ageing Study (MAS) will examine the clinical characteristics and prevalence of mild cognitive impairment (MCI) and related syndromes, and to determine the rate of change in cognitive function over time.

The Retired Professional Rugby Players Brain Donor Program is dedicated to bridging the gap in knowledge regarding the clinical onset associated with a past history of multiple concussions amongst retired professional rugby or union players. We are conducting a large-scale, longitudinal study to help identify possible early clinical features, progression (if indeed it is a progressive disorder), and potentially help with interventions. The purpose of the program is to recruit participants of the ‘Neuropsychiatric Health of Retired Rugby League and Rugby Union Players’ study concurrently being run by the research team for the collection of longitudinal standardised clinical information through assessment utilising neurological, neuropsychiatric, psychological and behavioural methods.