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 at the time of death?
We aim to minimise the time between the death of a donor and preservation of the tissue (ideally within 24-48 hours) to ensure that it is of the greatest value for research. Hence, it is essential for the next-of-kin, hospital, hospice, or nursing home staff to notify the Brain Bank Coordinator if a potential donor becomes increasingly ill and is not expected to live much longer. This allows the Brain Bank team to start making arrangements so that the brain donation can happen smoothly when the time comes. Otherwise, the Brain Bank Coordinator should be contacted as soon as possible after a donor dies by calling the MS Australia Brain Bank pager number on (02) 9963 1116.
State Brain Bank emergency numbers
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, Tasmania, Queensland and Victoria).
Please note that South Australia, Northern Territory and Western Australia are not taking new donations at this time.
The Brain Bank Coordinator will instruct the chosen funeral director to transport the body of the deceased donor to the nearest appropriate hospital or mortuary where brain donation can take place. The brain donation procedure is performed with great care by specially trained and experienced staff . During the autopsy, an incision is made at the back of the head of the deceased, the cranium opened, and the brain removed. If the donor’s consent explicitly allows it, the spinal cord, optic nerve, cerebrospinal fluid and eyes are also removed. The body is then reconstructed in such a way that it is difficult to see any evidence of the procedure. The procedure does not interfere with plans for an open casket funeral and viewing of the deceased. After brain donation, the funeral director will return the deceased to the funeral home specified by the next-of-kin where normal funeral arrangements can then take place. All costs of transportation, brain retrieval, and tissue processing are taken care of by the MS Australia Brain Bank, however all other funeral costs remain the responsibility of the family or the estate.
The Brain Bank Coordinator will require the following information:
- Donor’s full name and date of birth
- Date, exact time and cause(s) of death (if known)
- Location of the body
- Current status of the death certificate (check with GP or nursing staff)
- Contact details of chosen funeral director
Please note that while every effort will be made for the donation to proceed, in some instances this may not end up being possible. For example, if the death occurs over the weekend, in more remote locations of Australia, or if the Coroner is involved, as the time from death to storing the tissues may be prolonged, making the tissue unsuitable for research.
What happens to the brain?
After the brain is removed from the deceased donor, it is dissected according to an approved protocol. Half of the brain is cut into 1 cm coronal slices and frozen at -80 degrees Celsius. The other half is chemically fixed in formalin and processed after three weeks for diagnostic neuropathological examination. Other consented tissue such as the spinal cord and optic nerve are treated in the same way. If the tissue is fixed and frozen correctly, tissue can be preserved almost indefinitely and remain useful for research for many years.
Donated tissues are catalogued and stored. Sections from specific anatomical regions are removed and processed for diagnostic neuropathological examination by a qualified neuropathologist. Results of the final diagnosis can be reported to the donor’s doctor (and next-of-kin if requested) usually within two to six months.
Prior to being made available for research, the tissue undergoes further processing to identify and characterise MS plaques into specific types such as acute, chronic, chronic active, or remyelinating lesions.
A database of MS tissue and anonymised donor medical histories is maintained by MS Australia Brain Bank staff at the Brain and Mind Centre.