Brain donation - your questions answered

These questions and answers address the most commonly asked questions received by the Parkinson's Brain Bank about brain donation.

• Signing up to the Parkinson's Brain Donor Register
• About brain donation
• About research using donated tissue
• Contacting the Parkinson's Brain Bank

Signing up to 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.

back to top

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

back to top

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.

back to top

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 07659 104537 if it is an emergency. Otherwise, routine questions can be handled by calling 020 7594 9732 Monday to Friday between 9am and 5pm.

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)

back to top

• email
• Share