In the first instance, you should contact the nearest brain bank to where you live (or nearest to the person who is interested in donating) to obtain information about registration. In most cases it will be possible to register with your nearest brain bank.
If you are not sure which is closest, don’t worry as the brain bank you contact can refer you to the bank best placed to handle the donation.
Some of the brain banks specialise in collecting certain types of brain tissue – such as those from a donor who died suddenly or who suffered from a specific disease such as Alzheimer’s disease or multiple sclerosis. Your brain may be taken to a different bank but it’s important that you contact the nearest bank in the first instance.
Around 12 million people in the UK are living with a neurological condition and, as the average age of the population increases, the number of people developing dementia and other neurodegenerative diseases will increase rapidly. Research is needed to find new and better treatments for a wide range of conditions.
In many cases, this research will involve the study of human tissue from someone who has died (examining brain tissue of a living person is extremely difficult). Indeed, in many conditions examination of post-mortem brain tissue is the only way to make a definitive diagnosis to confirm or alter the diagnosis that the doctors have made during the donor’s life.
Researchers are making great advances in neuroscience and other diseases where the brain may play a part but there is still much we don’t understand about the human brain and examining brain tissue is vital to increasing this knowledge.
A cohort is a set of people who are studied over a period of time so that researchers can see how their health changes over that period. The UK has many cohort groups – some of which have been studied over many years. The people being studied may have given blood or tissue samples and may also have been involved in tests, answered questionnaires or had a brain scan. Brain tissue is particularly useful for research when researchers know a lot about the person who donated. Knowing more about the donor’s lifestyle and medical history can help researchers to better understand disorders of the brain or nervous system and ultimately find cures. For this reason, researchers are particularly interested if the potential donor is part of a ‘cohort’ or population study.
What might prevent the donation? While brain banks do everything they can to ensure that a donation takes place, it may not always be possible. For research, the brain tissue must be obtained from someone who has died recently (within 72 hours for the majority of brain banks - but please contact the relevant bank and check this requirement at the time of registration).
Each potential donation is considered on a case by case basis. Where possible all registered potential donors are accepted. Their suitability to donate will have been assessed during the registration process by writing to the donor’s GP for information relating to their condition (or lack of in the case of control participants) and obtaining key information from the individual making the enquiry.
If there is a delay after death it may not be possible to take samples of good enough quality for research. In these cases, the brain donation will not be accepted. Brain banks have different criteria for deciding whether a brain will be suitable.
Delays may occur because a Coroner is involved and the body cannot be released in time. In addition, brain banks rely on NHS mortuary services to assist with donations, and these may not always be available, particularly over weekends and holiday periods.
Yes, healthy brain tissue is just as important to research as diseased tissue, and there is a shortage of tissue donated by people who had a healthy brain when they died.
Researchers need healthy tissue for scientific studies in which they compare it with tissue samples from patients with neurological disease.
Many samples of normal tissue are requested by researchers both nationally and internationally for a range of projects including large-scale genetic investigations into neurological diseases.
Your representative/next of kin should contact the brain bank where you are registered as soon as possible to let them know that death has occurred. The bank will do everything necessary for the donation to take place. Brain donors should let their GP know in advance that they have agreed to donation so that a note is made and the doctor can make sure the process happens as speedily as possible.
When death does not take place in a hospital, it is usual for the body to be taken first to the funeral director’s premises (where the body must be refrigerated) and a time for the donation is then subsequently agreed between the funeral director and the pathologist. The donor’s GP will usually confirm the death, issue a death certificate and explain how to register the death. The majority of brain banks are able to meet the cost of transferring the body to a hospital mortuary for the donation to take place.
When the donor dies in hospital, the donation usually takes place before the body is transferred to the funeral director’s premises. In this situation, a hospital doctor will usually certify the donor’s death and the hospital’s bereavement office will be able to advise on any arrangements that need to be made for the deceased.
In the case of a Coroner’s post-mortem examination, the Coroner should be informed that the relatives have agreed to a brain donation and if the Coroner has no objections the donation can still be made.
Brain donation will not result in visible disfigurement and a viewing or open casket will still be possible.
The majority of brain banks require a donation to be received within 72 hours of the donor’s death (provided the body has been stored in refrigerated premises) therefore there is unlikely to be a delay to funeral arrangements. The donor may be released back into the care of the family-appointed funeral director on the same day as donation occurs or in some cases the following day depending on the time of the retrieval.
After removal the brain is transported to the brain bank as quickly as possible in a refrigerated case.
Once the brain arrives at the bank it will be weighed and examined for any visible signs of disease. The brain is then sliced in half and one of the hemispheres is dissected and stored in -80°C freezers so that it remains optimally preserved for use in research. The other half is preserved (fixed) in formalin and used to achieve a diagnosis. In order for the tissue to be made available for research a definitive diagnosis must first be made.
This can take some months to achieve as the fixed tissue is cut, processed, stained and finally examined by a neuropathologist.
The donated tissue will be used for high-quality research in both the UK and abroad.
A huge amount of research using donated tissue has taken place and subsequent donations are contributing all the time to what we know about neurological diseases such as: dementia (including Alzheimer’s disease); Parkinson’s disease; Huntington’s disease; multiple sclerosis; Motor Neurone Disease; psychiatric disorders such as depression, schizophrenia and obsessive compulsive disorders; and many other diseases and conditions.
At the same time, scientists are finding increasingly that the brain may play a part in many other conditions.
The tissue can be used in research for ten years or more.
Unfortunately, the brain banks cannot give out this information. All the tissue used by researchers will be helping to contribute to what scientists know about the brain and brain disease.
Scientists apply to use the tissue and their application has to be approved both ethically and scientifically. Sometimes, the application will be to use the tissue for teaching or training.
Yes. Some research focuses on trying to find if changes to any of our genes influence any of the changes we know occur in certain neurological conditions. Very little is known about the extent to which genes play a role in either causing or influencing how these diseases progress and we are working to improve our understanding in this area.
To look at genes researchers need DNA (which contains all genes). This can be collected from a very small piece of the donated brain tissue. The DNA can then be used for genetic research studies which involves looking for ‘spelling mistakes’ in the messages the genes give towards building the body and keeping it healthy.
Unfortunately, not. We still have limited understanding of the role of genetics in a number of neurological diseases, so, with very few exceptions there are no specific genetic tests available that have any predictive benefits. While such genetic tests exist for other forms of illness – for example, certain types of breast cancers – our understanding of the genes involved in dementia is not at the stage where we can predict whether or not other family members might suffer from the disease in the future. This is one of the objectives of our research.
Most brain banks can only receive donations of brain and spinal cord tissue. Some will also take other small research samples. If you are interested in donating other organs, please contact NHS organ donation.
Please be aware that if you have a history of memory problems or a diagnosis of dementia (with the exception of those people affected by vascular dementia) it is unlikely that you will be able to donate any other organs for transplant or research.
The Human Tissue Authority can provide information about full body donation. It is not usually possible to donate both your brain and the rest of your body separately, although some banks may have local arrangements to allow this to happen.