Brain donation - your questions answered
We've put together a list of the most commonly asked
questions and answers that we receive about brain donation and the
Parkinson's UK Brain Bank.
Becoming a brain donor
Why is tissue needed for Parkinson's research?
People with Parkinson's don't have
enough of a chemical called dopamine because certain nerve cells in
their brain have died. By studying brain tissue from people with
and without Parkinson's we are beginning to understand why these
nerve cells die. This is vital to developing treatments that can
slow, stop or even reverse Parkinson's.
In addition to research, tissue may be used for teaching
purposes and in the training of healthcare professionals.
What tissue is collected for research?
We collect the entire brain, the entire spinal cord and a sample
of cerebrospinal fluid - the clear, colourless liquid that
surrounds the brain and spinal cord.
In the future, we may need to collect small samples of other
tissues such as skin or gut for research.
I don't have Parkinson's. Could my brain still help
Yes! Researchers face a desperate shortage of tissue from brains
without Parkinson's - also called 'control' tissue. Control brains
are essential for experiments.
Scientists can only figure out what is going wrong in
Parkinson's by comparing control brains with the brains of people
What about similar conditions?
We also collect tissue from people with Parkinson's-related
disorders, including multiple system atrophy (MSA) and progressive
supranuclear palsy (PSP).
I would like to sign up but I don't have a next of kin or they live
abroad. What do I do?
If you don't have a next of kin, you can nominate someone to act
as one. This is done legally through your solicitor.
What if I sign up but then change my mind?
We understand that brain donation is not right for everyone. You
are free to change your mind at any time - just contact the
Parkinson's UK Brain Bank and let us know. We will then return
your original signed consent forms and remove your details from our
Since I joined the register, some of my personal details have
changed - what do I do?
It's important that we keep the details on your registration
forms up to date. Just contact the
Parkinson's UK Brain Bank and let us know of any changes.
Can I donate other parts of my body through other donor schemes as
Yes, we can work with other UK organ donor schemes for
transplantation and research, including the NHS Organ Donor
Register. Just contact the
Parkinson's UK Brain Bank and let us know which other
donor scheme you are registered with and we'll update your
Unfortunately, we can't work with whole body donation schemes,
as these require the whole body including the brain.
Will my personal details and medical records be kept
Yes. All registration forms and associated paperwork are stored
securely and remain strictly confidential. When a brain is donated,
each donor is given a unique identification code and all personal
information is removed. Personal details are never shared with
anyone outside of the Parkinson's UK Brain Bank - including
The tissue collection process
Does it cost me anything to donate my brain?
No. The Parkinson's UK Brain Bank covers all the costs for
What is the tissue collection process?
The Brain Bank team are told of the death of a donor by someone
phoning our 24-hour emergency number 07659 104537.
This number is clearly given on your Brain Bank donor card.
The Parkinson's UK Brain Bank team then arrange the
- The body is transported to the hospital nearest to place of
- A pathologist or postmortem technician at the hospital
retrieves the tissue.
- A member of the Brain Bank team travels to collect the
- The body to be returned to undertakers for the funeral.
- The tissue is then taken to the Brain Bank for processing and
When should my next of kin contact the Parkinson's UK Brain
If a potential donor becomes increasingly ill and is not
expected to live much longer, their next of kin can contact us in
advance on our 24-hour emergency contact 07659 104537. This allows
us to start making the arrangements, so that the brain donation
happens more smoothly when the time comes.
Otherwise, the next of kin should contact the Parkinson's UK
Brain Bank as soon as possible after death. We aim to collect a
donated brain within 24 hours of death. But we can accept brains up
to 48 hours after death.
What will my next of kin need to do?
- Register the death with the GP or, if out of working hours,
with the on-call locum doctor, in order to obtain a death
- Arrange a funeral director. The Brain Bank team will work with
the funeral directors to arrange tissue collection if the donor
died at home.
- See our information for family, friends and carers on what to do when someone dies and coping with
When will the tissue be retrieved?
Brain and spinal cord tissue deteriorates very rapidly. We aim
to collect tissue within 24 hours of death. But we can accept
brains up to 48 hours after death.
The Parkinson's UK Brain Bank team is on call 24 hours a day and
we aim to organise and carry out the donation as quickly and
smoothly as possible. Please make sure that your next of kin or
legal representative, and the healthcare professionals looking
after you, know of your wish to donate.
Will brain donation interfere with my funeral arrangements or
having an open casket viewing?
No, brain donation will not delay or interfere with your plans
for a funeral, cremation or burial. The brain and spinal cord are
removed in a respectful and careful manner that will allow your
body to be viewed in an open casket.
What happens if I die on holiday?
If you pass away while on holiday in the UK, we can still carry
out the donation as long as we are contacted in time. To maximise
the research quality of the tissue, we aim to collect the brain
within 24 hours.
However, if you are on holiday abroad we will not be able to
retrieve the brain in an appropriate time frame.
Why is it sometimes NOT possible to go ahead with the tissue
We try to avoid delays by working closely with families and
healthcare professionals. But sometimes we are unable to collect
and preserve tissue within 48 hours.
Possible reasons why we may be unable to collect tissue:
- Lack of a death certificate
- Death being referred to the coroner for cause of death to be
- Lack of suitable hospital mortuary facilities to remove the
- Other conditions which affect the brain such as cancer, or
infections like HIV
How we store and use donated brain tissue
How is tissue made available to researchers?
To help as many research projects as possible, brains are
divided into hundreds of samples. These samples are stored safely
and securely at the Parkinson's UK Brain Bank.
Scientists from the UK and around the world use our tissue in
their research. Our panel of scientific experts and people affected
by Parkinson's carefully reviews each application before approving
the projects we supply tissue to.
We cannot predict what type of project tissue will be used in or
where the research will be carried out. And tissue may also be used
for teaching purposes or in the training of healthcare
professionals. However, all research we support is ethically and
scientifically approved, and will help us better understand
Parkinson's and ultimately find a cure.
How is tissue stored and disposed of?
We carefully preserve donated tissue by storing it either in
formaldehyde (a liquid fixative) or freezing it at -85°C. This
means the tissue can be used for research for up to 10 years or
When tissue is no longer suitable for research it
is carefully disposed of. All tissue is disposed of in a
respectful manner. We never forget the people that the tissue we
Contact the Parkinson's UK Brain Bank
24-hour emergency contact:
If a donor has died or is not expected to live much longer,
please call 07659 104537.