Brain tissue donations

Many people with dementia and their relatives are interested in the possibility of donating their brain for dementia research after death. This factsheet looks at why scientists need brain tissue and what you need to consider before deciding to donate your brain.

Why donate brain tissue?

The human brain is complex and difficult to study in living people. It is also too complicated to replicate in the laboratory. Therefore, much of the research into Alzheimer's disease and other dementias relies on examination of brain tissue that has been donated after the person has died. This research allows scientists to investigate the basic underlying causes of dementia and, if possible, to discover how they relate to the symptoms experienced by the person during life. This work is also essential for observing the effects of currently available treatments for dementia. Better understanding is the first step towards better treatments.

Many people with dementia and their relatives are interested in the possibility of brain donation for research after their death. Scientists are very grateful for the generosity of the families concerned, especially as this process has to be carried out very soon after the person's death.

To ensure this research is thorough, it is also extremely important to have access to brain tissue from people who do not have dementia. This is known as control tissue, and is in even shorter supply than tissue from people with dementia. It is crucial that scientists have control tissue so that they can compare it directly with tissue from a person with dementia. These valuable donations are essential for developing new and better treatments for people with dementia and in the search for a cure.

Brains for Dementia Research (BDR)

There is currently a severe shortage of brain tissue available for dementia research. In recognition of this, Alzheimer's Society and Alzheimer's Research UK have jointly funded an initiative called Brains for Dementia Research (BDR).BDR is a network of brain bank facilities across England and Wales that aims to provide a simple, nationwide system for brain donation. The initiative hopes to enable more people to get involved in brain donation, which will in turn boost the number of brains available for this important research.

Older people with or without a diagnosis of dementia can register with BDR. Participants are then monitored for memory, cognition and behaviour throughout their lives. This close personal involvement enables researchers to not only compare changes between dementia and 'control' brains, but to look for specific brain changes in relation to particular symptoms of dementia.

Brain tissue donation must occur as soon as possible after death, ideally within 48 hours. Since this is a distressing time for the family, it is important to discuss brain tissue donation in advance and make sure an arrangement is in place. The BDR network helps people with dementia and those close to them to do this. Following death, BDR brain banks arrange for the person's body to be taken to hospital for a brief post-mortem to remove the brain. It is a short procedure and does not interfere with funeral arrangements. The body is then returned to the funeral director chosen by the family. BDR is committed to ensuring that the family receives the best possible support and that all their questions are answered.

The BDR Co-ordinating Centre is based at King's College London, and participating brain banks are based at universities in London, Oxford, Newcastle, Bristol, Manchester and Cardiff. Each has an international reputation of excellence and has made significant contributions to one or more areas of dementia research. The contact details for the BDR Co-ordinating Centre can be found at the end of this factsheet.

Points to consider

Making the decision to donate

• It is best to begin to consider the issues well before the person is likely to die. Family members need time to discuss the issue and to explore their feelings before making a decision. Some donation projects, including BDR, monitor the donor during life.
• Please note that brain banks may not always be able to accept donations if the decision to donate has only been made at the time of the person's death. This is because there may not be sufficient information about the person's medical history for researchers to work with, and it may be difficult to talk the decision through with family members and make all the necessary arrangements within the time frame that donation needs to take place.
• Wherever possible the person with dementia should be involved in the decision to participate in a brain donation project. However, the Mental Capacity Act 2005 makes provision for those lacking capacity to consent to participate in research, see 'Giving consent for brain donation', below.
• One of the incidental benefits of brain tissue donation is that you may receive a definitive diagnosis of your relative's condition, although this may not be for some months. Check with the brain bank about the kind of feedback that is provided about diagnosis. This information is generally given in the consent form.
• Many people with dementia and their relatives feel that making a brain tissue donation is a way of making a valuable contribution to research into the causes and potential treatments of dementia.

Finding a brain bank

• You will need to contact an appropriate research centre. The simplest way to do this is to contact your nearest BDR centre or the co-ordinating centre at King's College London, who will be able to guide you through the donation process.
• This factsheet lists all of the research centres in the UK. While we have made every effort to ensure that information is up to date, there may have been changes and it should be used as general guidance. It should be noted that some centres are only able to accept donations when people have been involved in regular assessments or research programmes while they were alive. The situation is changing all the time and there may be other centres that have not been included.
• You can telephone or write to your nearest research centre and ask if they would be interested in receiving a brain tissue donation. Each research centre requires certain information and has its own procedures, which should be explained to you. Some research centres like to talk to the relatives and the person with dementia.

Preparing for brain tissue donation

• If a consent form has been signed prior to the donor's death, all the relative needs to do is inform the brain bank, and they will facilitate the donation, liaising with the hospital and the funeral director.
• Arranging a tissue donation may involve certain expenses. Research centres are usually able to meet these but you should make sure that you are clear about this in advance. The amounts involved will vary from place to place but they are usually just transport costs.
• The brain bank will provide a copy of the consent form signed by the donor or their representative during the donor's life to the pathologist when the time comes. However, it may still be possible to complete and sign a consent form after the person has died - the brain bank can guide you on this. If an intention to donate form was signed then permission for a post-mortem and removal of tissue for examination and research will need to be given by someone qualified to do so, such as the next of kin. Each brain bank has its own guidelines on this issue of consent but they can advise and help you, so don't hesitate to raise any queries you have.

The donation process

• You may need to remind the doctor at the time of death that arrangements have been made for a donation in case this gets overlooked. As soon as possible after death the brain bank should be informed. If it is outside normal working hours, follow the instructions in the answerphone message. If there is any doubt, continue with your own plans as the brain bank can arrange for the donation to take place after the person has been taken to the funeral directors.
• Once the brain bank has been told the person has died, they will usually manage the donation process, liaising with the person's doctor, family funeral director and hospital pathologist. If the person dies in hospital, the hospital should be told about the donation, which should take place before the person is transferred to the funeral director's premises. If the person dies at home or in a nursing home, the funeral director can liaise with the brain bank or pathology department to arrange for the donation to take place.
• The removal of the brain will not cause any apparent disfigurement nor should it delay the funeral arrangements since it is carried out soon after death.
• The pathologist will need to remove the brain within 48 hours of death if possible as tissue starts to deteriorate when blood is no longer flowing through it. If the body is stored in refrigerated premises, however, it may be possible to accept tissue that has been removed within 72 hours.
• It is important to be clear about what will be removed and what will be retained by the brain bank. In most cases, the whole brain is removed, although for some diseases the brain bank may request the donation of the brain and spinal cord. The brain tissue will be used in up to 20 ethically approved research projects but small amounts may be retained indefinitely, usually as small samples on microscope slides.
• Once the brain has been removed and correctly stored, there is no need for urgency. It is a good idea for relatives to contact the research centre themselves to inform the pathologist of the person's death and to ask to be kept informed of the subsequent arrangements.

Giving consent for brain donation

Wherever possible the person with dementia should be involved in the decision to donate their brain to research. The person can, while alive and competent, consent to this, or they can nominate a representative to act on their behalf in this regard. This must be done in writing in the presence of a witness.

For those lacking the capacity to consent who have not already nominated a representative, those close to the person can give consent on their behalf, if they feel it is appropriate and reflects the decision the person themselves would have made if they had the opportunity to do so.

There is a ranking intended to help those seeking consent to know who to approach, and in what order, if someone is not available in reasonable time after death (spouse/partner, then parent/child, then brother/sister, and so on - these are known as 'qualifying relationsips'). The Human Tissue Authority's Code of practice on consent gives further information on nominated representatives and qualifying relationships. The Code of practice is available online at www.hta.gov.uk

BDR centres for brain donation

If a brain bank is unable to accept a tissue donation, they will attempt to forward the case to an alternative centre, provided the contact is made within 24 hours of the person's death. The BDR Co-ordinating Centre has out-of-hours contact details and will be able to advise on organising alternative arrangements if your nearest centre is not available.

BDR Co-ordinating Centre

Brains for Dementia Research Co-ordinating Centre
Wolfson Centre for Age Related Diseases
King's College London
St Thomas' Street
London SE1 1UL
T 020 7848 8377
E bdr.office@kcl.ac.uk
W www.brainsfordementiaresearch.org.uk

Cardiff Brain Donation Centre

Institute of Psychological Medicine and Clinical Neurosciences
4th Floor, Main Building
University Hospital of Wales
Cardiff CF14 4XN
T 029 2074 3427
E adresearch@cardiff.ac.uk

Regional Coverage: North, South and Mid Wales, Herefordshire, Shropshire, West Gloucestershire.

London Neurodegenerative Diseases Brain Bank

Brain Bank Coordinator
Institute of Psychiatry
PO Box 65
London SE5 8AF
T 020 7848 0290 (Office hours)
T 020 7848 0002 (Out-of-hours, staff can be paged 24/7)
E  brainbank@kcl.ac.uk
W www.iop.kcl.ac.uk/brainbank

Criteria: Well-characterised brain and spinal cord tissue from a variety of neurodegenerative conditions including Alzheimer's disease, motor neurone disease, fronto-temporal dementia and movement disorders. Also 'control' cases from individuals without neurological or psychiatric illness.
Regional coverage: Receives donations from all parts of the UK and provides tissue to research groups locally, nationally and internationally.

Manchester Brain Bank

Cerebral Function Unit
Greater Manchester Neuroscience Centre
Hope Hospital
Stott Lane
Salford M6 8HD
T 0161 789 7353 (ext 2561)
E brainbank@manchester.ac.uk

Criteria: Alzheimer's disease, fronto-temporal dementia, Huntington's disease, motor neurone disease. Ideally cases should have been clinically assessed prior to donation.
Regional coverage: North west England / West Yorkshire.

Newcastle Brain Tissue Resource

Institute for Ageing and Health
Newcastle University
Campus for Ageing and Vitality
Newcastle upon Tyne NE4 5PL
T 01912 481231
E nbtr@ncl.ac.uk

Criteria: Happy to receive enquiries from general public. Donations accepted from those registered in life with Brains for Dementia Research or other studies conducted at the centre.
Regional coverage: North east England.

South West Dementia Brain Bank

Dementia Research Group
The John James Building
Frenchay Day Hospital
Frenchay Hospital
Bristol BS16 1LE
T 0117 340 3070
E bdr-brainbank@bristol.ac.uk

Criteria: Accepts donors of any age who are affected by Alzheimer's disease or other dementias, and non-affected donors (controls) aged 65 or over.
Regional coverage: South west of England

Thomas Willis Oxford Brain Collection

Neuropathology Dept
Level 1, West Wing
John Radcliffe Hospital
Headley Way, Headington
Oxford OX3 9DU
T 01865 234904 / 01865 234403 (Includes out-of-hours message service)
E margaret.esiri@clneuro.ox.ac.uk

Criteria: Pre-assessed dementia cases, other neurodegenerative conditions and other well-studied cases of neurological disease. Also autism, paediatric neuropathology and controls of all ages.
Regional coverage: Bucks, Berkshire, Oxon, Northants, Warwickshire, Gloucestershire, Wiltshire.

Other UK brain banks [L1]

Cambridge Brain Bank

Department of Histopathology
Level 5 Box 235
Addenbrooke's Hospital
Hills Road
Cambridge CB2 0QQ
T 01223 217336
E brbank@addenbrookes.nhs.uk

Criteria: All neurodegenerative conditions including Alzheimer's disease and normal controls from individuals without neurological or psychiatric illness.
Regional coverage: Eastern region only.

Northern Ireland Regional Neuropathology Service

The Royal Victoria Hospital
Grosvenor Road
Belfast BT12 6BA
T 028 9063 2319

Criteria: Does not have a formal brain bank but will carry out brain donation on behalf of doctors and Alzheimer's Society.
Regional coverage: Northern Ireland.

Queen Square Brain Bank for Neurological Disorders

UCL Institute of Neurology
1 Wakefield Street
London WC1N 1PJ
T 020 7837 8370
E s.stoneham@ucl.ac.uk

Criteria: Uncommon forms of dementia - fronto-temporal dementia, Pick's disease, Progressive Supranuclear Palsy, Parkinson's disease, multiple system atrophy, uncommon movement disorders and unaffected donors (controls).
Regional coverage: Whole of UK.

Southampton University

Neuropathology − Faculty of Medicine
Level E (813) South Block
Southampton General Hospital
Southampton SO16 6YD
T 023 8079 5720/6634
E j.nicholl@soton.ac.uk

Does not have a brain bank, but is a co-ordinating centre for the UK BRain Archive Information Network (BRAIN UK). Willing to co-ordinate with BDR and other brain banks to arrange post-mortem services.

MS Society Tissue Bank

Wolfson Neuroscience Laborotories
Imperial College London
Hammersmith Hospital Campus
160 Du Cane Road
London W12 0NN
T 020 7594 9734
E msstb@ic.ac.uk

Criteria: Donations are accepted from patients with MS, with neurological conditions other than MS, with non-neurological conditions and 'healthy' controls.
Regional coverage: Whole of UK.

Parkinson's UK Brain Bank

Centre for Neuroscience
Imperial College London
Hammersmith Hospital Campus
160 Du Cane Road
London W12 0NN
T 0207 594 9732
E brainbank@imperial.ac.uk

Criteria: Patients with Parkinson's disease and other movement disorders. Also 'healthy' control donors.
Regional coverage: Whole of the UK.

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Factsheet 410

Last reviewed: March 2012
Next review due: March 2014

Reviewed by: Professor Margaret Esiri, Professor of Neuropathology, Neuropathology Dept, John Radcliffe Hospital, Oxford, and Ms Michele Gorham, National Clinical Lead Nurse Prion Disease, National Prion Clinic Practice Manager, University College London