Dr Claire Shepherd
Director Sydney Brain Bank
The Sydney Brain Bank (SBB) is a biobanking facility that collects, characterises, stores and distributes human brain and spinal cord tissue for research into disorders of the brain and mind.
The facility was established in 2009 and is located at NeuRA, one of Australia’s leading institutes in brain research.
The Sydney Brain Bank houses specialised laboratories and equipment designed for handling, dissecting and staining human brain and spinal cord tissue specimens. Our staff are highly trained in neuroanatomy, histology and immunohistochemistry and also have extensive skills in neuropathology and microscopy (brightfield, fluorescence and confocal).
We are accredited through the NSW Health Biobanking certification program and operate within a national network of brain banks to facilitate requests for tissue and to build strong cohorts for research. We also partner with international consortia investigating the genetic architecture of brain and mind disorders and improved neuropathological characterisation.
The Sydney Brain Bank currently works with 10 brain donor programs. These focus on conditions such as Alzheimer’s disease, Parkinson’s disease, motor neuron disease, Huntington’s disease, frontotemporal lobar degeneration and neurologically unaffected individuals.
In 2020, the National Rugby League (NRL) announced its support of the most recent donor program to the Sydney Brain Bank. This research at NeuRA is looking into the prevalence of chronic traumatic encephalopathy (CTE) and impact of sports-related brain injuries.
Our brain donors undergo detailed health assessments during life in order to examine how neurodegenerative changes may or may not be impacting on their quality of life.
After death, brain and spinal cord tissue collection is carried out in a NSW Hospital mortuary according to standardised autopsy procedures. All tissue is comprehensively characterised according to standardised research diagnostic criteria before it is banked for use. Researchers are invited to submit proposals for studies utilising these tissues, which are reviewed with the help of an independent scientific review committee. For more information about accessing tissue please head to our tissue request page – https://sbb.neura.edu.au/about
Human brain tissue studies are vital to our understanding of neurodegenerative disorders, mental illness and normal ageing and have led to the development of diagnostic tools, the discovery of new disorders, novel genes and disease subtypes, the elucidation of disease mechanism and the development of therapeutic strategies. The Sydney Brain Bank is also internationally recognised for its excellence in clinicopathological research due to its standardized collection of brain tissue from prospectively followed cohorts with detailed longitudinal clinical information.
We currently hold brain tissue from over 700 donors with diverse neuropathologies including Alzheimer’s disease, Lewy body disease, motor neuron disease, Huntington’s disease, frontotemporal lobar degeneration, multiple system atrophy, chronic traumatic encephalopathy as well as age-related change. Each year we distribute over 6000 frozen, fixed and slide-mounted tissue specimens to local, national and international research groups to facilitate advances in medical research. The majority of research articles arising from the use of Sydney Brain Bank tissue are published in the top 10% of scientific journals and have a field weighted citation index of 2.43.
The Sydney Brain Bank is supported by NeuRA through philanthropic donations made to the NeuRA Foundation, and successfully awarded philanthropic and competitive grant funds.
Brain donation is when a person and their family decide to donate this tissue for medical research following death. Microscopic cellular changes cannot be assessed without such altruistic tissue donations.
Brain donation after death is a precious and enduring gift to research. There is a shortage of this tissue for researchers who use it to understand how cellular changes occur in healthy and diseased states. By understanding how these changes occur, methods can be developed to help alleviate abnormalities and hopefully one day prevent dysfunctional cellular pathways from starting altogether.
We are aware that making the decision to donate your brain after death is a very personal one. We appreciate that the death of a loved one is an emotional and stressful time for those left behind. That is why we recommend that this decision be discussed with family prior to enrolling in one of the brain donor programs. That way all family members understand your wishes.
The Sydney Brain Bank does not accept direct enrolment of donors, instead they accept those who have given pre-consent through an existing brain donor program who recruit individuals and collect clinical information during life.
The Sydney Brain Bank works with a number of different brain donor programs who recruit individuals and collect clinical information during life.
Information about these brain donor programs, including contact details, can be found on the Sydney Brain Bank website. Please visit this site to search for the most appropriate brain donor program and use the contact details under the program you wish to enquire with.
The brain will be removed as soon as possible after death.
Some donor programs have approval to also ask if you would like to donate your spinal cord for medical research. This is done because nerve cells involved in helping you move, touch and feel are located in your spinal cord. Some brain diseases, such as motor neuron disease, also affect these cells found in your spinal cord. Collection of the spinal cord is more invasive and takes longer than brain collection alone, and for this reason some people choose only to donate brain tissue after death.
Tissue samples are processed with the utmost care and respect by the Sydney Brain Bank at NeuRA. All tissue is held by us so that local, national and international scientists can use the material for ethically approved research projects. These projects could include assessment of DNA for genetic variability and modifications.
No, the donated brain is not used for transplantation, but solely for research purposes. Therefore, separate permission is required for this type of donation.
People who have an infectious disease such as HIV, Hepatitis B, Hepatitis C or Creutzfeldt-Jakob disease are unable to participate in the brain donor programs.
The brain donor program can also have other criteria that may exclude some people according to their project aims and ethical approval.
The removal of the tissue is no different from any other surgical operation, and is performed by highly skilled professionals. The donor is always treated with dignity and respect. The donation of brain and spinal cord tissue will not alter the physical appearance of the body and will not affect your decision to have an open casket.
No, the brain bank coordinator will ask the funeral directors to charge the Sydney Brain Bank for any additional costs involved in transferring the body to the hospital where the donation or removal of the tissue is carried out.
Some people may be concerned about their genetic material being stored or tested in a laboratory. Discovery of a mutation in a person may have implications for his or her children in terms of their risk of developing the disease, their ability to obtain insurance and other issues. In most circumstances, the research findings from the study of an individual’s DNA do not have any implications for the person concerned, so there is often no information to be provided to people, or their families, who have given a tissue sample. However, if a disease-causing genetic mutation is identified in a family member and appropriate consent is given, this information will be made available.