Survey shows a lack of awareness of brain donation for research

Our survey of 2,000 UK adults shows that research is at risk due to a lack of awareness surrounding brain donation.

The figures reveal that vital research to find a cure for Parkinson’s could be at risk because of confusion and uncertainty around brain donation.

What’s the issue?

Our UK-wide survey of 2,000 adults found that almost 4 in 5 (78%) UK adults are unaware that the NHS Organ Donor Register does not include the brain. They are not aware that you have to register through a separate system to sign up to donate your brain for research.

This misunderstanding poses a threat to Parkinson’s research. Parkinson’s is the fastest-growing neurological condition in the world, and the need for research has never been greater. Conducting research on donated brains from healthy individuals and people affected by Parkinson’s is essential if we are to uncover what causes Parkinson’s, and one day find a cure.

The donation of brain tissue has already led to major advances in our understanding of Parkinson's, and resulted in new treatments being developed and tested.

What is the Brain Bank?

The Brain Bank, based at Imperial College London, collects precious tissue from people with and without Parkinson's who have decided to leave their brains to Parkinson's research.

The tissue is provided to researchers all over the world who, together, could make the next discovery to help us find a cure. 

What it means for research

Over the last 40 years, research using tissue donated to the Parkinson’s UK Brain Bank has led to major advances in our understanding of Parkinson’s. As a result, new treatments are currently being developed and tested. They may help to reduce oxidative stress, support malfunctioning mitochondria and remove excess iron in the brain. These treatments have the potential to slow or stop the progression of Parkinson’s, something no current treatment is able to do. 

None of this would have been possible without people being willing to donate their brains. 

1 in 37 of us will be diagnosed with the condition in our lifetime. Now is the time to accelerate research, by encouraging brain donation, so that we can drive forward the development of better treatments for the 145,000 people affected by Parkinson’s now and prevent Parkinson’s developing in future generations.

Our Brain Bank donation appeal

We are launching an appeal to encourage people with, and without, Parkinson’s to pledge to donate their brain. This comes ahead of the change in organ donation in England expected on May 20, which will move to an opt-out system. Adults will be considered to have agreed to be an organ donor for transplantation when they die. However, this does not include the option to donate your brain for research.

Joining the appeal are actress Sophie Thompson and her mum Phyllida, who is living with Parkinson’s, and Anne Twist, mother of Harry Styles, as her dad has Parkinson’s. They have pledged to donate their brain along with Jane Hill, David Jensen and his wife Gudrun, Paul Mayhew-Archer, Sian Lloyd and Dave Clark and his wife Carolyn.

Dave Clark, Sky Sports Presenter and Parkinson’s UK supporter, was diagnosed with Parkinson’s in 2011. He said:

“The brain is the most precious thing we have. It contains our loves, memories and our personality. Giving it to medical research is the greatest gift I can offer. Imagine if your brain was the one that unlocked a cure for this devastating neurological condition?

"The need for effective treatments for Parkinson’s has never been greater and scientific research on brains both with and without Parkinson's is essential. That’s why my wife Carolyn and I are pledging to donate our brains to the Parkinson’s UK Brain Bank.”

Pledge your brain for Parkinson’s

Parkinson’s is the fastest growing neurological condition in the world. Every hour, two more people are diagnosed. But together, we can find a cure – thanks to the power of our brains.