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

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, spinal cord (if applicable), pituitary tissue and cerebrospinal fluid (CSF) 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 tissue. Ultimately, we hope that scientific work of this kind will lead to better and more effective 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 brain, spinal cord (if applicable), pituitary tissue, 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 after death.

The donation of brain, spinal cord (if applicable), pituitary tissue and CSF after death is a big decision and needs to be discussed with family and friends. Advice is available from the Cambridge Brain Bank (CBB) research nurse who would be very happy to discuss any concerns or questions you or your family may have.

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.

After death a detailed examination of brain, spinal cord (if applicable), pituitary tissue and CSF by a pathologist, enables scientists to study the disease in detail. The findings of the examination will be given to the donor’s clinician where appropriate. Our aim is to lead to better understanding of neurological diseases and eventually to improvements in diagnosis and treatment.

What is the Cambridge Brain Bank (CBB)?

The Cambridge Brain Bank (CBB) collects, stores and manages the use of brain, spinal cord and pituitary tissue that has been donated for research. It is located in Addenbrooke’s Hospital at Cambridge University Hospitals Foundation Trust.

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 well as for research. The pituitary gland is easily removed during brain donation.

What is cerebrospinal fluid (CSF)?

This is the clear, colourless fluid that surrounds the brain and spinal cord. This is obtained during donation. Research may help identify potential markers of disease in the CSF.

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

Yes, if possible. Having access to information about each donor’s medical history means that researchers can match up specific symptoms with the changes they find in the tissues.

When someone registers with the CBB we ask permission to access medical records and also that a questionnaire is completed about symptoms, lifestyle and medication every five years by the donor, the Nominated Individual (NI) or Person in a Qualifying Relationship (PQR).

This information is kept strictly confidential and only provided to researchers in an anonymised form.

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 brain, spinal cord and pituitary tissue?

It is important to make the necessary arrangements for brain, spinal cord (if applicable) and pituitary donation well in advance. Family members need time to discuss the issue 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 or family members 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?

No. All costs directly related to the donation are met by CBB. Funeral arrangements and costs including the transfer of the deceased into the care of a funeral director are the responsibility of the family. CBB will usually ask the same funeral director to transfer the deceased to the facility for brain donation - this will be paid for by CBB.

Will the donation affect funeral arrangements?

There should be no disruption to funeral arrangements. The family, NI or PQR should arrange transfer of the donor to the care of a funeral director as soon as possible after death. Donation should ideally be carried out within 72 hours of death. This does not delay funeral arrangements.

Will the donation affect the appearance of the donor?

The donation is carried out under the supervision of a pathologist and does not affect their facial appearance.

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?

In exceptional cases it may not be practically possible to arrange to bank the donated brain, spinal cord (if applicable), pituitary tissue and CSF within a reasonable time period. Banking should be completed as soon as possible after death. We make every effort to ensure this is the case. However, donation does rely on timely receipt of legal documentation (medical certificate of cause of death) and availability of the retrieval team. These can be delayed by weekends and bank holidays.

What about confidentiality?

Details of those who wish to donate to the bank will be entered onto a database. Confidentiality and anonymity will be maintained by a unique code number and all records are held securely. Researchers are not given any information which could identify the donor.

Data and tissue provided by the bank will only be analysed by authorised members of a research group whose project has been approved. The results of the research findings on individual donors will not be released.

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

Only ethically and scientifically approved projects may use tissue obtained from the bank. Such research may involve many types of study, including genetic studies, and could lead to the discovery of genes that predispose to or modify disease as well as the development of new drugs by the pharmacological industry.

What happens to tissue not used for research?

Any tissue not used for research will be respectfully disposed in accordance with the Human Tissue Authority codes of practice.

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

1. The individual themselves
2. Nominated Individual (NI) on 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

3. 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, simply inform Cambridge Brain Bank (CBB) via the contact details below.

Contact information

Monday to Friday 09:00 to 17:00 hrs
Tel: 01223 217336
or email Cambridge Brain Bank.

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 the Health Research Authority website (opens in a new tab).