DONORS

donors

The NSW Brain Banks do not accept direct enrolment of donors; instead they accept those who have given pre-consent through an existing NSW Brain Banks brain donor program. There are a number of different clinical research programs that enrol appropriate people into their studies. Each of these programs focuses on particular types of brain disorders, or looks at particular populations of people. Please see below for information and contact details for programs enrolling donors. If you are interested in participating in a brain donor program, then please contact one of the programs listed below that best suits your current situation. If you do not reside in NSW, please contact us on 02 9399 1707 to discuss.

Unfortunately, not all conditions or diseases can be accepted. Furthermore, end-of-life or at-death brain donations cannot be accepted through the brain donor programs, or by either of the NSW Brain Banks, due to ethics requirements and the need for standardised clinical information for tissue characterisation and use in research studies.

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

Filter the donor programs by areas of research

Based at The University of Sydney, Using our Brains enrols brain donors from a broad cross-section of the community. Donors will be initially assessed for suitability for enrolment and then, once enrolled followed annually through questionnaires. Enrolled donors may also be invited to participate in further research assessments by the program or its affiliates.

Based at the University of Sydney's Brain and Mind Centre, the NSW Movement Disorders Brain Donor Program is for patients with Parkinson’s disease or a parkinsonian condition who are willing to participate in clinical research assessments. Normal 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 and associated syndromes, and studies people with Alzheimer’s disease as well as normal controls for comparison. The FRONTIER Brain Donor Program does not usually accept public referrals but works through specialist referral for research participation, with the person required to participate in clinical assessments for dementia.

The NeuRA Volunteers Brain Donor Program is dedicated to understanding the cellular changes that occur in the brain and spinal cord during normal ageing and age-related disease and how this may impact on their function. The program takes advantage of your participation in NeuRA research studies through your involvement in the NeuRA Research Volunteer Registry.

The results from these studies provide important information about neural function. Investigation of the relationship between these findings and the cellular structures involved will further our knowledge about how cells in our brain age. By understanding how cellular changes occur, methods can be developed to help alleviate abnormalities and hopefully one day prevent dysfunctional cellular pathways from starting all together.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 NeuRA, the Genetics of Dementia Brain Donor Program was established to facilitate research in familial Alzheimer’s disease and other genetic forms of dementia where a genetic cause has been identified or is likely. For further information contact Dr William Brooks by telephone or email.

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

Please email only
None
clement.loy@sydney.edu.au

Scroll to top

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.

Our current research goal is to understand the type of cellular changes occurring in the brain and spinal cord, and by studying patients with different clinical and genetic subtypes of MND, we will be able to determine if there is a single type of change, or a variety of underlying cellular changes.

The FOREFRONT program is spread over Macquarie University, Neuroscience Research Australia and the Brain and Mind Research Institute, University of Sydney.

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

Sydney Memory and Ageing Study
Based at the Centre for Healthy Brain Ageing (CHeBA), UNSW, The Sydney Memory and Ageing Study (MAS) began in 2005 to 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. Many participants have become brain donors and longitudinal clinical data are available.
(Not currently recruiting)

Older Australian Twins Study
Based at UNSW, CHeBA is involved in The Older Australian Twins Study (OATS), a longitudinal, multi-centre study that investigates healthy brain ageing in elderly twins. Brain ageing and brain diseases are determined by multiple genetic factors that interact with environmental influences. Since identical twins share 100% of their genes, whereas non-identical twins share half the genetic information, detailed comparisons of these two groups has the potential to discover new genes involved in cognitive decline or resilience.
(Not currently recruiting)

Sydney Centenarian Study
The study of exceptionally long-living individuals can inform us about the determinants of successful aging, and the factors that determine why some centenarians escape dementia. This was the rationale for starting the Sydney Centenarian Study (SCS) in 2009 through CHeBA at UNSW.
(Currently recruiting)

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 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. If you are interested in being involved in the ‘Neuropsychiatric Health of Retired Rugby League and Rugby Union Players’ study, please contact the team.