Dr Claire Shepherd in the Sydney Brain Bank labs

Sydney Brain Bank

FACILITY INFORMATION

FREQUENTLY ASKED QUESTIONS

Here are some frequently asked questions about brain donation and the Sydney Brain Bank. To see the answer, click on the question of interest and the answer will appear below it. If you have other questions not listed or would like more information then please contact us at braindonors@neura.edu.au or phone: 9399 1707

What is brain donation?

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.

Why is brain donation important?

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.

Making the decision to become a donor

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.

How to register as a brain donor

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.

When can brain donation occur?

The brain will be removed as soon as possible after death.

Why is spinal cord tissue requested?

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.

What happens to the tissue?

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.

Is brain donation the same as tissue or organ donation? Such as cornea or kidneys?

No, the donated brain is not used for transplantation, but solely for research purposes. Therefore, separate permission is required for this type of donation.

Is there anyone who cannot be a donor?

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.

Will the removal of the tissue affect funeral arrangements?

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.

Are there any costs involved?

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.

What do the researchers do if they find out sensitive genetic information?

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.

See what’s going on at NeuRA

FEEL THE BUZZ IN THE AIR? US TOO.

MyCOACH: Connected Advice for Cognitive Health

Researchers at Neuroscience Research Australia (NeuRA) and University of New South Wales (UNSW) are inviting people with Mild Cognitive Impairment (MCI) or Subjective Cognitive Decline (SCD) to participate in a voluntary online research trial aiming to reduce the risk of dementia. What is the MyCOACH Trial about? This research aims to test the effectiveness of an e-learning and behaviour change course designed to support healthy brain ageing and reduce risk of dementia.  The course is tailored for people reporting cognitive difficulties or changes. The trial runs for 12 weeks, with a follow up at 1 and 2 years afterwards. What is involved in this research trial? Interested volunteers will be asked to complete some eligibility checks to confirm this study is a good match.    If you decide to take part you would: Be placed into either the MyCOACH e-learning group (“Intervention”) or the Control Education group (“Control”). To ensure the research is fair and unbiased, we cannot choose the group for you.   It will be random - like names out of a hat. MyCOACH e-learning group (“Intervention”):  Volunteers in this group participate in the 12 week online MyCOACH program.  This includes 6 e-learning chapters, as well as three phone consultations with a dietician and/or exercise physiologist, and a 3-month subscription to a brain training app. Control Education group (“Control”): Volunteers in this group will receive information about cognitive health and risk factors for dementia.  This group is important to be able to measure the effectiveness of the research.  At the end of the study, volunteers in this “control” group can access the full MyCOACH e-learning course. Take part in four telephone interviews throughout the study with questions about your health. This includes a follow-up at the end of 12 weeks, and 1 and 2 years later. You may be eligible to participate in the MyCOACH Trial if you: Have concerns about changes in your memory or thinking OR diagnosed with ‘Mild Cognitive Impairment’ Are 65 years of age or older   Expressions of interest [ninja_forms id=376]   Contact If you are interested or know someone who might be, please contact us for more information: Dinaz Parekh Email: mycoach@neura.edu.au Phone: (02) 9399 1815
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