Donor information: Donating brain, spinal cord tissue, pituitary and cerebrospinal fluid for research

You are probably familiar with organ donations of the heart, kidneys or eyes to sustain the health or even the life of people in need.

Similarly, the donation of brain tissue for research is a precious and unique gift. Scientists can learn and understand more about disease processes when they are able to work on donated human tissue. Ultimately, we hope that scientific work of this kind will lead to better and more effective diagnostic tools and treatments and that future generations will benefit from your help.

There are many diseases that affect the brain. These include the various forms of dementia (such as Alzheimer's, Lewy body and fronto-temporal dementia), motor neurone disease, multiple sclerosis, and tumours.

Medical professionals and scientists involved in research, and those working with patients affected by these forms of disease, need to study the tissue in detail, and this can only be achieved after death.

We are therefore asking patients with such diseases to consider donating their entire brain, spinal cord tissue (if applicable *), pituitary, and CSF, after their death. As scientists need to study brains from both people with and without disease as part of their research, we are also asking people with no neurological disease to donate their brain, spinal cord, pituitary and CSF.

* Spinal cord donation is requested if a patient has multiple sclerosis (MS) or motor neurone disease (MND)

Cerebrospinal fluid (CSF) is the clear, colourless fluid that surrounds the brain and spinal cord. Research may help identify potential markers of disease in the CSF.

Brain donation is a big decision and should be discussed with family and friends. Advice is available from the Cambridge Brain Bank (CBB) research nurse who would be very happy to discuss or refer any concerns or questions you or your family/friend may have.

What is the Cambridge Brain Bank (CBB)?

The Cambridge Brain Bank (CBB) collects, stores and manages the use of brain, spinal cord and pituitary tissues that have been donated for research. This resource is located in Addenbrooke’s Hospital at Cambridge University Hospitals Foundation Trust (CUH NHS FT).

Why is tissue needed for medical research?

We are still unable to diagnose many of the diseases of the brain, spinal cord and pituitary with absolute certainty during life, and for many diseases, few effective treatments exist.

Our aim is to support better understanding of neurological diseases and eventually to improvements in diagnosis and treatment.

Why do we also ask for pituitary tissue?

The pituitary is a small gland attached to the base of the brain. It produces hormones which regulate other hormone producing glands in the body controlling growth and many other processes. Pituitary tissue is needed within diagnostic clinical laboratories as control material as well as for research. The pituitary gland is easily removed during brain donation.

Does the CBB need to know any medical or personal details?

Access to information about a donor’s medical history helps researchers better understand how symptoms are linked to changes seen in donated tissue.

When someone registers with the CBB, we ask for permission to access their medical records. We also invite the donor, or their Nominated Individual (NI) or Person in a Qualifying Relationship (PQR), to complete a detailed questionnaire about symptoms, lifestyle and medication.

All information is treated as strictly confidential and is shared with researchers only in an anonymised form and as appropriate to their ethical approval.

Researchers who are approved to use samples under the CBB research ethics are provided with limited donor information, such as age, sex, ethnicity and diagnosis. Researchers using their own ethical approval may have received permission to access additional clinical information, such as blood test results or imaging, where appropriate.

Creutzfeldt Jakob disease (‘CJD’)

If there is a possibility you have been at risk of CJD or variant CJD disease (sometimes incorrectly referred to as ‘mad cow disease’) we are unable to accept the donation. We therefore ask all donors if they have been told that they are at risk of either of these forms of CJD.

When should plans be made for donating to research?

It is important to make the arrangements for brain donation well in advance. Those close to the potential donor need time to read and discuss this leaflet, ask us any questions, and to explore any possible disagreements. The death of a loved one is a time of enormous emotional stress and not the time for discussing such emotive issues as tissue donation.

As time passes it may be necessary for you to alert new people such as care home staff of your wish to donate and to remind others who may have forgotten. We also inform your GP, so they are aware of your wish.

Will the tissue donation cost the family anything?

All costs directly related to the brain donation are covered by CBB. Funeral arrangements and related costs, including the initial transfer of the person who has died into the care of a funeral director, remain the responsibility of the family.

When possible, CBB will ask the same funeral director to assist with transferring the person to and from the facility involved in the brain donation. The costs of this transfer, as well as the specialist courier service used to deliver donated brain tissue to CBB, are met by CBB.

Will the donation affect funeral arrangements?

If the donor dies outside a hospital setting, the family or Nominated Individual (NI) will usually need to arrange transfer into the care of a funeral director as soon as possible after death.

Brain donation is normally carried out within two to three working days, and this does not usually delay funeral arrangements. The person who has died is most often returned to the funeral director on the same day that the donation takes place. CBB staff then contact the family or NI to inform them that donation is complete and that the donor is back in the care of the funeral home.

Will the donation affect the appearance of the donor?

The brain, pituitary gland and spinal cord (where applicable) are removed carefully and respectfully by trained mortuary staff. This process does not affect the visible appearance of the person who has died.

If you would like any further information about how the donated material is removed, a member of the team can explain this if you wish.

Will the family find out what the donated tissues show in a clinical examination?

The CBB always writes to relatives thanking them for the donation and asking them to indicate whether they wish to receive a summary of the final diagnosis. It can take a number of months for the final results to become available.

Is completion of the donation always possible?

Occasionally, it may not be possible to proceed with brain donation. To support the use of tissues for research, collection usually takes place as soon as possible after death, ideally within 72 hours. We make every effort to respect a donor’s wishes and work closely with other professionals involved in the donation process. Donation depends on receiving the required legal documentation in a timely way (such as a signed medical certificate of cause of death or coroner’s authorisation), as well as on the availability of the funeral director and trained staff involved in tissue retrieval and banking. At times, weekends and bank holidays may affect how quickly this can be arranged.

What about confidentiality?

Details of anyone who registers with CBB are stored on a secure database. Confidentiality and anonymity are maintained throughout the donation process by the use of a unique identification code, and all records are held securely. Researchers are not given any information that could identify the donor.

Donated tissue and data are only used by authorised members of approved research or clinical teams.

Research findings relating to individual donors are not shared or released.

What happens to the donated tissues?

The brain is processed in two ways to allow maximum information to be obtained and to ensure tissue is usable for many years to come. The CSF sample and half the brain are frozen and used for research. The remaining tissue is preserved in formaldehyde solution and allows for both neuropathological diagnosis and research.

Donated materials are stored securely and confidentially in HTA licensed areas.

Will the family find out the results of the pathological examination?

Donated brain tissues are carefully examined by a pathologist, a specialist doctor. This detailed examination can help confirm a diagnosis and supports research into understanding the disease in more detail. Where appropriate, the findings are shared with the donor’s clinical team.

In some conditions, such as dementia, the clinical diagnosis made during a person’s life is based on symptoms, assessments and scans. The examination of brain tissue after death provides a more definitive pathological diagnosis. Comparing these findings helps researchers improve understanding of disease and may contribute to the development of better tests and diagnosis for patients in the future.

Following the donation, CBB will always write to the donor’s relatives to thank them and to ask whether they would like to receive a summary of the final diagnosis.

Please be aware that this process can take many months, as the examinations are detailed and complex.

The full report may be provided to the family upon request. However, given the detailed and technical nature of the pathological examination, it is often more appropriate for the report to be sent directly to the clinician, allowing the family to discuss the findings with them if they so wish.

What types of research will be carried out on tissue donated to the bank?

Tissue donated to the bank is only used for research projects that have been carefully reviewed and approved on both ethical and scientific grounds.

Approved research may include a range of studies, such as those looking at genetics, disease processes, and the development or testing of new treatments. Some studies may help identify genetic factors that influence disease, while others may support the development of potential new medicines. As most studies require only a very small amount of tissue, a single donated brain can contribute to many different research projects over time.

Research techniques are continually changing with advances in research technologies however Cambridge University Hospitals consent forms do not allow the use of samples in animal-based research. Any research requests involving animal studies are identified during the application process and are not approved.

In addition to research, your tissue may also be used as control material for diagnostic tests or for teaching purposes in the training of health care professionals, in the UK.

What happens to tissue not used for research?

Any donated tissue that is not used for research is treated with dignity and disposed of respectfully, in accordance with Human Tissue Authority guidance.

Who can consent to brain, spinal cord (if applicable), pituitary and CSF donation?

1. The individual themselves
2. Nominated Individual (NI) upon the individual’s death

Someone appointed by the donor who has the responsibility (and legal authority) to consent to donation on death of the donor

1. A Person in a Qualifying Relationship (PQR)

In the absence of a Nominated Individual (NI), Person(s) in a Qualifying Relationship (PQR) are listed in order of precedence:

• spouse or partner,
• parent or child,
• brother or sister,
• grandparent or grandchild,
• niece or nephew,
• stepfather or stepmother, half-brother or half-sister,
• friend of long standing.

If you are considering registering with Cambridge Brain Bank or would like to discuss it further, please do contact us by telephone or email using the contact information below.

What happens if I change my mind?

You can withdraw your consent at any time. Your decision will be respected and you will not be asked to explain your reasons.

If you decide to withdraw, please contact the Cambridge Brain Bank (CBB) using the details below.

Contact information

Cambridge Brain Bank (CBB)
Monday to Friday, 9.00am to 5.00pm
Telephone: 01223 217336

Please leave a voicemail and a member of staff will return your call. Messages left outside these hours will be responded to on the next working day.

Email: cambridgebrainbank@nhs.net

Further references:

Human Tissue Authority guidance for the public regarding brain donation can be found at: HTA Donor Guidance (opens in a new tab)

Information on the National Research Ethics Service can be found on Health Research Authority (opens in a new tab)