Donate Tissue
Helping researchers study the brain and spinal cord to find better markers and treatments for MS.
Researchers need to study the brain and spinal cord tissue from people with different MS subtypes and disease stages to find out how and why demyelination occurs.
Researchers also need to study brain and spinal cord tissue to develop ways of repairing and preventing tissue damage.
Donating your brain to the MS Australia Brain Bank after your death will
- Help researchers find diagnostic markers for early detection
- Help researchers develop better treatments
- Help researchers discover possible cures and prevention measures for MS
We realise that choosing to become a Brain Donor can be a difficult decision, and support and understanding from family members are essential. We would be glad to answer any questions or concerns you may have to help you make a well-informed decision.
To receive the MS Brain Donor Information and Consent Kit, please call 1300 672 265 or submit your enquiry online.
If a donor has died or is not expected to live much longer, please call the MS Australia Brain Bank as soon as possible on (02) 9963 1116 (New South Wales, Australian Capital Territory, Queensland, Victoria and Tasmania). Please note that South Australia, Northern Territory and Western Australia are not taking new donations at this time.
Discuss your decision with your family. To ensure a smooth brain donation at the time of death, it is essential that your family are aware and supportive of your decision to become a Brain Donor. After all, they may be the ones who will notify the Brain Bank at the time of donation. The MS Australia Brain Bank will not proceed with brain donation against the wishes of your family at the time of death, regardless of the deceased donor’s wishes.”
Please fill out the form below to receive an information pack and consent form
If your Brain Bank registration is urgent, please contact (02) 9963 1116.
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Why donate?
Help researchers study and understand MS in the human brain.
Researchers need to study MS in the human brain
Despite over 150 years of study, the cause of Multiple Sclerosis (MS) remains unknown. MS affects over 25,600 people in Australia and this number is increasing. Laboratory models of MS are not an exact replica of what happens in the human form of the disease so researchers need access to human tissue to truly understand MS, improve treatments and ultimately find a cure.
Although modern immunotherapy can usually suppress or prevent relapses early in the disease, there is no disease modifying treatment for people who suffer from the progressive forms of MS.
There are two main types of progressive disease:
Secondary Progressive MS (SPMS) affects about 50% of relapsing-remitting MS patients around 10 years from diagnosis. Here, people start off with attacks or relapses and then start to slowly deteriorate, irrespective of whether new relapses continue to occur.
Primary Progressive MS (PPMS) affects about 10% of people with a slow and steady deterioration from the onset of symptoms.
Understanding what causes disease progression is one of the major challenges for MS researchers.
Brain imaging techniques such as magnetic resonance imaging (MRI) are useful for diagnosing MS and monitoring its disease activity. However, recent studies have found that many changes in the brain and spinal cord due to MS are not detectable on MRI scans. To assess the effects of MS on the central nervous system (CNS), researchers need to study the cells, genes and proteins at the microscopic or molecular level in MS tissue.
Thirty years of animal studies have led to more and more effective drugs that suppress MS relapses and new lesion formation. However, these medications only suppress and do not cure MS. This is because MS is a uniquely human disease and animal models do not accurately replicate MS as a disease, particularly its progressive forms.
Since human brain tissue is generally not available for study during life, researchers can only use post-mortem tissue donated by deceased MS patients who consented to their tissue being used for research before they passed away. Researchers need the highest quality and best characterised tissue to work on. For this reason, the MS Australia Brain Bank strongly encourages people with MS to register to donate post-mortem tissue by signing up as a MS Brain Donor early in their life. Each brain donation is a precious and invaluable research resource that can bring us one step closer to curing MS.
Who can register to be a MS Australia Brain Bank Donor?
Every person with MS in Australia above the age of 18 can register with the MS Australia Brain Bank.
There is no upper age limit for becoming a Brain Donor and we welcome all people with MS to consent to donate post-mortem tissue, regardless of the stage or subtype of disease. Even people with mild or early-stage disease should consider signing up to donate. If you are signed up and have a fatal illness or accident, your brain and other tissues could still be used for MS research, and therefore help others with the disease.
Donor pre-consent is important so that medical information can be collected ahead of time. Therefore, the sooner someone can register as a Brain Donor, the better. Pre-consent also ensures that brain donation can be arranged rapidly after death. ‘At death’ donations cannot be accepted.
Exclusion Criteria
Tissue from people with infectious diseases such as Hepatitis B or C, HIV, or Creutzfeldt-Jakob disease (CJD) is not accepted by the MS Australia Brain Bank. This is to reduce the risk to staff and scientists handling the tissue.
People without MS
Researchers need to compare MS tissues with tissue derived from people who do not have a brain disease or other neurological diseases in order to find out what is specifically wrong in MS brains.
People without MS, including family members and friends, can still donate their brains for research.
If you live in Queensland, New South Wales, Australian Capital Territory, Victoria or Tasmania, please complete the registration form, and we will send you a consent pack. Unfortunately, we are unable to accept registrations from South Australia, Northern Territory or Western Australia at this time.
Donating Post-Mortem Tissue for MS Research
What can I donate?
Since MS is a disease of the brain and spinal cord, these tissues are of most use to research. Changes in the optic nerve, cerebrospinal fluid (CSF), and blood vessels are also observed in MS, and therefore these and other tissues/fluids may also provide useful information for studying the causes of MS. Donors can specify on the Consent Form which specific tissues and/or fluids they wish to donate, although the current donation protocol in most states only includes the brain and spinal cord.
What does it mean to be a Brain Donor?
By signing the informed Consent Form to become a Brain Donor, you grant permission for a post‐mortem examination of your brain (and spinal cord) to be conducted in accordance with national laws and regulations. These tissues are dissected and stored for the purpose of distribution to approved researchers. You also give permission for the MS Australia Brain Bank to access your medical records so that the brain material can be correlated your clinical history of symptoms and drug therapy for effective research. All your details will be kept private and confidential.
Consented tissue is removed from a person with MS only under the following circumstances:
- The donor has died and a death certificate stating the cause of death has been signed by a medical practitioner (i.e. the death is not subject to coronial investigation).
- The donor had, during their lifetime, given informed consent to the removal and use of their tissue for research purposes and had not withdrawn their consent prior to death.
- The donor’s senior available next-of-kin consents and does not object, to the donor’s brain donation at the time of death of the donor. If the donor was unable to consent, then the senior available next-of-kin acknowledges that the donor had not during their lifetime expressed an objection for the donation to proceed.
- The donor does not have any proven infectious diseases.
- The designated officer of the hospital authorises the brain donation to take place (if applicable).
- The post-mortem interval is ideally between 24 and 48 hours.
What happens if a donor becomes ill?
If a donor becomes seriously ill and is not expected to live much longer, it is helpful for the Next of Kin, hospital, hospice, or nursing home staff to notify MS Australia Brain Bank staff as soon as possible.
This allows us to begin making arrangements so that the donation can occur smoothly when the time comes.
We aim to minimise the time between a donor’s death and preservation of the brain tissue, ensuring both minimal disruption to funeral arrangements and the highest possible value of the tissue for research.
What happens at the time of death?
At the time of death, please notify the MS Australia Brain Bank by calling our 24-hour paging number on (02) 9963 1116 (covering New South Wales, Australian Capital Territory, Tasmania, Queensland, and Victoria).
Please note: Due to current resource and logistical constraints, the MS Australia Brain Bank is unable to accept new donations from Western Australia, South Australia, or the Northern Territory.
Once notified, brain bank staff will coordinate with the nominated funeral director to transport the donor to the nearest appropriate hospital or mortuary where brain donation can take place.
Information Required at the Time of Death
When notifying the Brain Bank, please have the following details ready:
- Donor’s full name and date of birth
- Date, exact time, and cause(s) of death (if known)
- Donor location
- Status of the death certificate (check with GP or nursing staff)
- Contact details of the nominated funeral director
The donation procedure
The procedure is carried out by specially trained staff with great care and respect:
- An incision is made toward the back of the head.
- The cranium is carefully opened, and the brain removed.
- If the donor’s consent allows, the spinal cord, optic nerve, cerebrospinal fluid, and/or eyes may also be retrieved.
- The body is reconstructed so that there is minimal visible evidence of the procedure, ensuring it will not interfere with an open casket viewing or funeral plans.
After donation, the funeral director returns the donor to the nominated funeral home, and normal funeral arrangements proceed.
Costs: The MS Australia Brain Bank covers all expenses related to transport, brain retrieval, and tissue processing. All other funeral costs remain the responsibility of the family or estate.
Note: While every effort is made for the donation to proceed, it may not be possible in certain situations – for example, if death occurs in a remote area, over a weekend or public holiday, or if the death falls under the Coroner’s jurisdiction, which may delay tissue retrieval beyond the suitable timeframe.
After Donation — What Happens to the Brain
Following removal, the brain is processed according to an ethics-approved protocol:
- Half of the brain is sliced into 1 cm thick sections coronally (cut from front to back) and frozen at –80°C.
- The other half is chemically fixed in formalin, then processed after two to three weeks for diagnostic neuropathology.
- Other consented tissue, such as the spinal cord or optic nerve, is treated in the same way.
- If half of the brain is unable to be frozen (e.g. due to logistical or other reasons), then the whole brain is chemically fixed in formalin and processed after two to three weeks for diagnostic neuropathology
If preserved correctly, tissue can remain suitable for research for many years.
Specialist neuropathologists examine the fixed tissue, and a final diagnosis is usually available within 2–6 months. The report can be sent to the donor’s doctor (and Next of Kin upon request) for discussion.
Before being made available to researchers, MS lesions in the brain tissue are classified into specific types — such as acute, chronic, chronic active, or remyelinating — and all tissues are catalogued and stored in the Brain Bank’s secure database.