Donors

Information on Brain Donation

We appreciate your interest in becoming a brain donor. Although becoming a donor will not benefit you directly, it will contribute to the advancement of medical knowledge of brain disorders.

Please take time to read the following information carefully and discuss it with your family, friends or general practitioner if you wish.

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An introduction to the Queen Square Brain Bank for Neurological Disorders

The Institute of Neurology and the National Hospital for Neurology and Neurosurgery have an international reputation as a centre of excellence for research into and treatment of neurological disorders.  The Queen Square Brain Bank for Neurological Disorders (QSBB) has established a unique brain collection, which is used to study the effects of disease and to support research into disorders such as Parkinson’s disease (PD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), dementia and dystonia. It has made a significant contribution to our understanding of the causes of neurological disease and in developing new treatments.

A brain donation is a gift.  Because it is a very complicated organ, the whole brain is needed for diagnosis, research, medical and scientific education and audit.  In special cases we also examine the spinal cord, if it is thought to contribute to the disease process.  Some tissue samples are preserved in fixative for diagnosis. Other tissue is frozen and kept at a low temperature so that it can be used for research over long periods of time.  The research usually begins by examining the tissue under a microscope to identify any disease processes that have affected the brain.  We then use specialist techniques to investigate possible abnormalities in brain and nerve cell proteins and in blood vessels in the brain.  We may also analyse the DNA (genetic material) to look for abnormalities that may be specific to some diseases.

Brains are stored in a locked facility where only certain staff have access. To ensure all information remains confidential, the tissue is given a unique code number and records are held securely.  To ensure anonymity the same unique code numbers are also used on photographs that may be taken of tissue specimens and microscopic slides.

Nervous system tissue is supplied to researchers in other universities both in the UK and world‑wide.  We also carry out some research with the support of industry.  This is in line with the Institute of Neurology’s policy of encouraging research that will lead to new therapies.  In these instances intellectual property agreements are set up, which means, neither the scientists nor the donor’s families gain a financial advantage.

The importance of correct diagnosis

Further information about many neurological disorders can only be gained by a detailed post-mortem and microscopic examination of the brain.  For research to be precise a diagnosis made in life must be confirmed by neuropathological evaluation.

Results of research, which rely on collections of data from a large number of cases, are published in scientific journals and are not available on an individual basis.  The anonymity of individual cases will be preserved in the research procedure and subsequent publications.

We would be happy to provide further information on the diagnosis and any other information available after the post-mortem.  This will be provided by trained QSBB staff or appropriate medical or nursing personnel. Relatives of the donor often gain comfort in knowing the nature of their loved one’s illness. With development of scientific knowledge and improvements in neuropathological diagnosis further significant information relating to individual cases may become available in the future. Such information will be provided at the request of the next-of-kin.

Brain donation by people with no neurological disease is of equal importance, providing essential ‘control’ tissue for comparison.  Without this important gift, research cannot go ahead.

How to become a brain donor

You should be over 18 years of age and a resident in the UK.  You should discuss with your family your wish to donate your brain and if you wish, your spinal cord, to the QSBB following your death.  You will need to complete and sign an ‘Intent to Donate Form’ (which can be obtained by contacting QSBB) witnessed by your next of kin and send it to the Queen Square Brain Bank, Institute of Neurology, 1 Wakefield Street, London WC1N 1PJ.  If you are unable to complete this form yourself it is acceptable for a relative or appointed representative to do this for you.

Once your declaration form has been received by the QSBB you will be registered as a donor.  We will send you a letter of welcome and a donor card, which you should carry at all times. You will also receive a self-assessment form, requesting information on your health and lifestyle.  Potential donors with a neurological condition will be asked to complete this form on a yearly basis.  This information will be stored on our computerised database so that essential clinical information is available to the pathologist.

The identity and the data collected about all registered donors remain strictly confidential.

At the time of your death your next of kin or appointed representative will be required to sign a consent form giving permission for the brain donation to take place.

Actions to be taken following the death of a donor

Following the death of a donor the QSBB must be contacted as soon as possible.  Once informed of a donor’s death by the next of kin, the QSBB will arrange for the donor’s body to be transported to the nearest hospital where the removal of the brain and, if agreed, the spinal cord, can be performed. Before a post-mortem examination can be performed a QSBB consent form must be signed. The hospital at which the post-mortem examination is performed may require an additional local post-mortem consent form to be signed. Only the brain and the spinal cord are transferred to the QSBB.  The donor’s body can then be returned to the family’s chosen funeral director and the usual funeral arrangements can then proceed.  As brain donation does not require removal of the eyes or lead to disfigurement of the face, it does not prevent open casket or other traditional funeral arrangements.  Removal of the spinal cord results in a long scar on either the front or back of the body, but this is not visible once the body has been prepared for the funeral. However, in view of this some donors may decide not to donate the spinal cord. All costs directly related to the removal of the brain will be met by the QSBB. Funeral costs must be met by the family.

For legal reasons some deaths require a post-mortem examination to be performed on behalf of HM Coroner. In these circumstances it is often still possible to arrange for the transfer and examination of the brain at the QSBB. This would require discussion between HM Coroner, QSBB medical staff and the next of kin at the time of death.

A letter to the next of kin will acknowledge receipt of the donor’s brain.
As research projects may require new information from the next-of-kin, the QSBB staff will ask their permission to make contact with them in the future, if necessary.

Important notes

Even if registration was not completed during life, the next-of-kin or appointed representative can still arrange for brain donation following death (in the knowledge that the donor was or would have been in agreement).

If any of your details change, for example your address, your general practitioner, diagnosis, etc. please notify the QSBB so that our records can be amended.

As time passes it may be necessary for you to alert new people to the bequest or remind others who may have forgotten.

Signing the declaration of intent form does not commit you to joining the scheme.  If you change your mind in the future, you can withdraw your permission at any time. 

If you wish to register on the Brain Donor Scheme, please contact Susan Stoneham, Administrator, on 020 7837 8370

The UCL Institute of Neurology promotes teaching and research of the highest quality in neurology and the neurosciences. The Institute of Neurology and the National Hospital for Neurology and Neurosurgery are members of  UCL Partners, Europe's largest academic health science partnership.