About Brains for Dementia Research
There are 850,000 people living with dementia in the UK today and this figure is set to double in the next 30 years. Dementia has a huge impact on a person’s life and is one of society’s most urgent health and social care challenges. Despite this, treatment for dementia is very limited and there is no cure.
Human tissue is vital for dementia research but in the past was in short supply and is not covered in standard organ donation schemes. With the support of Alzheimer’s Society and Alzheimer’s Research UK, Brains for Dementia Research was set up in 2007 to establish a network of brain bank facilities across England and Wales.
It is now a ‘gold standard’ for brain tissue banking, linking five leading brain banks (based in London, Oxford, Newcastle, Bristol and Manchester) and a research centre in Cardiff in a network of common standards, best practice and cooperation. This lays the foundation to enable the highest quality dementia research, which aims to find effective treatments for dementia.
In each centre, people with mild cognitive impairment or a diagnosis of dementia, and healthy participants, are supported to register for brain donation by specialist research nurses.
This is a unique initiative, as the memory, thinking and behaviour of each prospective donor are monitored throughout their later life through regular assessments. This means that when the time comes for the donation to be made, researchers also have a detailed medical history and can see how brain changes correlate with symptoms.
Since we began in 2007, 3,278 people have signed up to donate their brain, and the brain banks are now no longer looking for more people to sign up through the Brains for Dementia Research scheme. Some of the brain banks may be able to register new donors separate to Brains for Dementia Research, depending on where you live. To find out where your nearest brain bank is, please visit the BDR UK Brain Banks Network where you can find out the contact details.
“Dementia is one of our greatest medical challenges, and across the world, researchers are rising to this challenge to improve our understanding of the underlying neurodegenerative diseases. We want to find effective treatments and ultimately find ways to prevent future generations from developing dementia. Our research takes many forms, including using donated human brain tissue from healthy people and those with dementia. In the past this has been challenging, but BDR has been instrumental in providing this much needed resource. Using BDR tissue has given us new insights into the diseases that cause dementia, helping us to make important steps towards the medicines of the future.”Prof Bart De Strooper, Director of the UK Dementia Research Institute on the value of tissue from Brains for Dementia Research:
Voluntary participation
Participation in Brains for Dementia Research is entirely voluntary and donors can withdraw at any time without giving a reason. Donors taking part with the agreement of their study partner can likewise be withdrawn.
After death of the donor their nominated representative or next of kin can subsequently withdraw consent on the donor’s behalf, at any time, either before or after donation has taken place, should they believe this would have been the donor’s wish. It is therefore important that key family members are fully aware of the donor’s wishes.
We are very conscious that dementia is a challenging condition for both people affected and their carers. We are mindful of the fact that brain donation takes place at a highly difficult time for family members.
Ethics and management
All the brain banks in the network operate within the legal requirements laid down by the Human Tissue Authority (Human Tissue Act 2004), which governs collection, storage, sample distribution for research and disposal of post mortem tissue.
All potential donor recruitment and clinic assessments are undertaken in compliance with the Mental Capacity Act (2005) and other good clinical practice guidelines.
Each Brain Bank and the Coordinating Centre is governed by a management committee of expert doctors and scientists (in neuropathology, neuroscience and neuropsychiatry), independent experts and lay members. The tissue and data access committees look at each application to ensure tissue and data is used wisely, responsibly and efficiently.
Ethical approval
The overall project and its management committees have been approved by the National Research Ethics Service. Each Brain Bank has its own ethical approval as a research tissue bank. Each Brain Bank and BDR Coordinating Centre submit annual reports to the National Research Ethics Service.
Each donation of data and tissue is used towards a number of approved projects. The identity of the donor is never revealed to the researcher, and the donor’s identity will never be revealed in any publication. Database security is the highest available.
Staff
All our research field team are dedicated professionals who undergo regular refresher training in clinical practice.