Brain donation - your questions answered
Our questions and answers address the most commonly asked questions
received by the Parkinson's Brain Bank
about brain donation.
"Brain donation is a vital gift. I urge people with
Parkinson's, their family and friends to consider joining our Brain
Donor Register."
Dr George Gveric, Parkinson's Brain Bank Manager
Find out how to become a brain donor
Frequently asked questions
Signing up for the Parkinson's Brain Donor
Register
I don't have Parkinson's or other neurological condition. Could my
brain help researchers?
Yes, researchers face a desperate shortage of brains without
Parkinson's – also called 'control' brains. Control brains are
essential for experiments. Scientists can only figure out what is
going wrong in Parkinson's by comparing control brains with
Parkinson's brains.
I would like to sign up but I don't have a next of kin or they live
abroad. What do I do?
As part of our registration, we need consent - a signature from
yourself and a next of kin. 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 and 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 Brain Bank and let us know. We will then return
your original signed consent forms and remove your details from our
computer database.
Since I signed up, some of my personal details have changed – what
do I do?
It is very important that we keep the details on your registration
forms up to date. Just contact the
Parkinson's Brain Bank with the new information.
A family member has just passed away and wanted to donate their
brain – but didn't get round to signing up. Is it still
possible?
Yes, if the family believes it was the donor's intent to donate.
The family needs to contact the Parkinson's
Brain Bank and provide us with a fax number or email address.
We will email or fax the consent forms to the next of kin for
signature.
As soon as the signed forms are faxed back or the scanned copies
emailed to us, we can arrange for the donation to take place.
Our team aims to collect a donated brain within 24 hours of death
so it is vital for the family to contact us as soon as possible
after death. But we can accept brains up to 48 hours after
death.
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Image: Science Photo Library
About brain donation
What kind of tissue does the Parkinson's Brain Bank collect and
provide to researchers?
We collect the entire brain, the entire spinal cord and a sample of
spinal cord fluid.
Will my personal details and medical records be kept
confidential?
Yes, all the 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 divulged to
anyone outside of the Parkinson's Brain Bank – including
researchers.
Does it cost me anything to donate my brain?
No, the Parkinson's Brain Bank covers all the costs for the
transport of the donor's body to the hospital where the tissue will
be removed, the tissue removal and the return of the donor to the
undertakers responsible for the funeral. Funeral expenses, however,
remain the responsibility of the family – the same as if a donation
was not made.
Can you work with other donor schemes?
Yes, we can work with other UK organ donor schemes for
transplantation and research, including the NHS Organ Donor
Register – just let us know in advance. However, we cannot work
with whole body donation schemes – as they require the whole body
including the brain.
How long does the donation process take?
The Parkinson's Brain Bank team is on call 24 hours a day so we can
organise and carry out the donation as quickly and smoothly as
possible.
We aim to collect the brain within 24 hours after death and quickly
return the body to the funeral directors for the funeral. But we
can accept brains up to 48 hours after death.
It is important that you tell the certifying GP about the wish of
the deceased to donate their brain. This will ensure there are no
unnecessary delays.
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 holidaying abroad we will not be able
to retrieve the brain in an appropriate time frame.
What happens if there is a postmortem?
If a postmortem investigation is carried out, we will speak to and
take guidance from the coroner. Where possible, the coroner will
co-operate with the donor's decision to donate and allow us to take
tissue. However, this is entirely at the discretion of the
coroner.
I have a few questions about brain donation – can I speak to
somebody?
Yes, we are happy to talk through and answer any questions about
brain donation. Contact the Parkinson's
Brain Bank
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About research using
donated tissue
If you have collected over 250 brains for Parkinson's research, why
do you need any more?
Until we find a cure for Parkinson's, we need to supply more tissue
to researchers for their research projects. We need more brains to
be able to do this.
Even though the brain is a large organ, the regions that are
affected by Parkinson's are very small. For example, the main area
affected in Parkinson's is called the substantia nigra and is about
the size of your thumb nail. These parts are in great demand and
get quickly used by researchers.
How will my brain be made available to researchers?
To help as many research projects as possible, your brain will be
divided into hundreds of tissue samples. These samples are stored
safely and securely at the Parkinson's Brain Bank.
Researchers apply to the Parkinson's Brain Bank when they need
tissue for their projects. Our scientific panel of experts
carefully review each application before approving the projects we
supply tissue to. We then match the researcher's requirements with
the tissue available.
At this stage, we cannot predict what type of project your tissue
will be used for or where the research will be carried out.
However, we can assure you that the research will be ethically and
scientifically approved, and used to further our understanding of
Parkinson's to help find a cure.
The Brain Bank
newsletter has all the latest on current research that uses our
tissue.
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Contacting the
Parkinson's Brain Bank
Who normally contacts the Parkinson's Brain Bank when a donor
passes away?
We are often contacted by hospital nurses, nursing home staff, GPs
and funeral directors. But more commonly, the family contacts us
directly on our 24-hour Emergency Contact 07659 104537.
When should my next of kin contact the Parkinson's Brain
Bank?
If a potential donor becomes increasingly ill and 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 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.
The Parkinson's Brain Bank team can start making arrangements for
the donation before the doctor has completed the formal paperwork
to certify the death. However, we won't be able to finalise the
arrangements for transporting the body to the hospital for the
brain donation until the death has been certified by a doctor.
Please only use the 24-hour Emergency Contact number if it is an
emergency, otherwise routine questions can be handled by calling
020 7594 9732 Monday to Friday between 9am and 5pm. Contact the Parkinson's Brain Bank
When I call the 24-hour Emergency Contact number, what information
should I provide?
To start making the arrangements for the donation, we will need to
know the information below about the donor who has passed away.
- Full name and donor number (if known)
- Date of birth
- Current location of the body
- Name and address of legal next of kin
- Current status of the death certificate
- Time and cause of death (if known)
- Contact details of funeral director (if known)
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