South West Dementia Brain Bank
To support dementia research that has the potential to contribute to our understanding of the underlying diseases or to be of value to sufferers and their families.
- JustGiving Page
- Cost Recovery
- Testimonials from donors and their families
How the SWDBB resource is managed
The South West Dementia Brain Bank (SWDBB) laboratory is housed within the Learning & Research Building at Southmead Hospital. The SWDBB, has had previous financial support from BRACE, Alzheimer’s Research UK, the North Bristol NHS Trust Research and Innovation Department and DeNDRoN and is currently supported by BRACE, the Medical Research Council, and by Alzheimer’s Research UK and Alzheimer’s Society through Brains for Dementia Research.
The SWDBB is under the co-directorship of Professor Seth Love and Professor Patrick Kehoe, and is licensed to operate as research tissue bank by the Human Tissue Authority (HTA). SWDBB has approval from North Somerset and South Bristol Research Ethics Committee to operate as a research tissue bank.
The day-to-day running and co-ordination of the SWDBB are overseen by a Local Management Group comprising the SWDBB directors, senior researchers in the Dementia Research Group, an independent member of the University Research Governance Team, and the SWDBB Manager. The Local Management Group reports to the SWDBB Research Governance Committee, which oversees broader strategic and research governance issues for the SWDBB. The SWDBB also reports to the University of Bristol Human Tissue Working Group.
How the SWDBB is organised
The SWDBB opened for the receipt brain donations for dementia research in the mid 1980s. SWDBB still accepts donations but in 2010 became one of the recruitment centres and member brain banks in the ABBUK-funded Brains for Dementia Research (BDR) Network project. Going forward, all future and potential donors will be encouraged to register for donation to SWDBB under the auspices of the BDR project, which involves prospective donors undertaking a number of assessments from the time they register until the time of their donation. This process will provide a very rich amount of information on which to base future diagnosis but also for information that will be of great importance in informing future research studies.
What does the bank contain?
The SWDBB holds brain tissue from over 1000 subjects who donated their brains in strict accordance with ethically approved procedures. Each donation has been examined by a neuropathologist and given a final diagnosis according to international guidelines.
Frozen and formalin-fixed paraffin-embedded tissue and DNA are available from most of the brains, as is a considerable amount of other information that has been systematically collected in relation to Aβ and tau pathology, cerebral amyloid angiopathy severity, RNA integrity and pH. For a subset of SWDBB donated brains we also have samples of post-mortem ventricular cerebrospinal fluid (CSF).
For much of the archive, we still retain a substantial volume of original medical notes although in the future, all brains collected using the BDR protocol will have more detailed, prospectively collected, cognitive assessment data.
The SWDBB is part of the MRC UK Brain Banks Network. For further information about samples available from the SWDBB and across the network, please register as a user of the MRC database of tissue samples.
The Dementia Research Group has a strong tradition of collaboration as demonstrated by publications of its joint leads Professor Patrick Kehoe and Professor Seth Love. The group and continues to welcome new collaborations.
SWDBB tissue can be made available, subject to appropriate application and subsequent approval by the SWDBB Local Management Committee. Tissue can be made available to applicants from the SWDBB archive or those collected under BDR protocols. Potential applicants are advised to make informal enquires to the SWDBB manager to discuss the likely availability of tissue that might be requested and in turn the most appropriate way to apply.
Information for prospective donors
The Brain Bank is very grateful for brain donations as they make an invaluable contribution to research. We appreciate that the time of death can be difficult for the family and strongly encourage potential donors or their relatives to make the necessary arrangements whilst the prospective donor is still alive.
We maintain a register of potential donors who have given consent for their brain (and spinal cord in clinically relevant cases) to be donated when they die. In addition to donations from people who have been affected by dementia, we have a pressing need for donations from older people who have not been affected by a neurological condition. There is a national shortage of such brain tissue. To register as a potential donor who does not have a neurological condition you need to be aged 55 years or over.
Informal queries about making a donation or to request further information on what is involved, please contact the SWDBB manager during office hours Monday-Friday on 0117 4147821.
To donate to the South West Dementia Brain Bank and Dementia Research Group please go to our JustGiving Page
The aim of the SWDBB is to provide researchers with access to high quality brain tissue to further our understanding of dementia. The tissue is obtained with full consent from potential donors or their families.
Almost all major advances in our understanding and treatment of dementia have been based on research on human brain tissue. Yet despite much progress, the precise causes of nerve cell damage in Alzheimer’s disease and other dementias remain poorly understood. Existing treatments reduce symptoms for a period of time but do not stop progression of the disease. We have an urgent need for more research into dementia, and comparison of brain tissue from people who have had dementia with that from people who have not is a crucial way for us to find out why different types of dementia occur, how they differ and how they progress. Our work allows the SWDBB to provide suitable samples of brain tissue to as many people as possible who are in a position to contribute to dementia research.
What is not well known is that the diagnosis of Alzheimer’s disease or other dementias cannot usually be confirmed without examination of the brain after death. It is common for this examination to show that the actual illness responsible for the dementia was different from that diagnosed during life. Establishing the accurate diagnosis is critical to progress in research and treatment. Finding out the final, confirmed diagnosis is also often important to the relatives of the donor, helping families to obtain closure after the death of a loved one. Establishing an accurate diagnosis is therefore not only the foundation of all of the research activities of the Brain Bank but also a key part of the service we provide to the donor’s family and to healthcare professionals who were involved in the donor's care.
There are an estimated 850,000 people living with dementia in the UK today and by 2025 the number is expected to rise to over one million.
The South West Dementia Brain Bank (SWDBB) is part of the University of Bristol. It is housed within the Learning & Research building at Southmead Hospital and opened for the receipt of brain donations for dementia research in 1984. It is a resource for the banking of brain tissue kindly donated by people to aid research that concerns the causes or other aspects of dementia and that has the potential to be of benefit to dementia patients and their families. The donations are either from patients who have developed dementia or from people aged 65 years or more who have not had memory problems. The availability of this donated tissue is essential for dementia research.
The SWDBB and Dementia Research Group relies on charitable funds and academic grants to support the costs of SWDBB staff, researchers, tissue storage, consumables, tissue preparation and transport.
Donations to support the SWDBB and Dementia Research Group are greatly appreciated and can be made through Just Giving or through the University of Bristol website.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.
Alternatively, if you would prefer to make a donation by cheque please make your cheque payable to 'University of Bristol' and send to Dr Laura Palmer, Brain Bank Manager, South West Dementia Brain Bank, University of Bristol, Learning & Research Level 1, Southmead Hospital, Bristol BS10 5NB.
Testimonials from donors and their families
“I am a huge supporter of research into Alzheimer’s and other dementias after seeing firsthand the effect it has on people and their families. Deciding to be a brain donor can be an emotional decision, but if my brain can contribute even a small amount to improving our understanding of dementia then it will have been hugely worthwhile. Brain tissue is vital for progress to be made in understanding the devastating diseases that cause dementia and I am happy to be doing my bit to help.”
Chester Guttridge, 93, from Bristol
"My husband Mike and I 'signed up' after I heard about Brains for Dementia Research at a Carers' meeting. The research nurses came to see us and we had a really 'fun' time with them. They were actually going through a procedure to access our mental ability but made the process so pleasant that Mike was very much at ease. We saw the nurses again around 1 year later and again went through the process, which was very calm and gentle. When Mike passed away at Hospiscare in May 2015, everything was handled with such professionalism and kindness. I was made to feel in complete control of the situation. With immense sensitivity I was reminded what was going to happen in order for the donation to go ahead, and it did. I cannot praise the team enough; everything that they promised would happen did, with no problems at all. Subsequently, I received a report from the Brain Bank as to what they had found in Mike's brain. In life he had been diagnosed as having corticobasal degeneration but they discovered that he actually had Alzheimer's disease which was a surprise to me. It seems that the symptoms of these two diseases can sometimes be very similar. The Professor at the Medical School that diagnosed Mike has obtained the report from the Brain Bank and is going to use Mike's case for teaching purposes which is just one of the enormous benefits of brain donation. I can only say that I feel very strongly about the benefit of brain donation so don't have any qualms about what will happen, just think of the good that you'll be doing for future medicine".
Mrs Terri Channon, from Exmouth
Susan Jonas helped to donate her aunt’s brain to medical research in 2013, an experience that inspired her to sign up to donate her own brain after her death. Here she explains the process around donating her aunt’s brain, and why she believes contributing to brain research in this way is so important.
*Reproduced with permission
UK Brain Bank Network: cost recovery update
The milestone for July 2015 for the MRC funded brain banks (Edinburgh, Newcastle, Oxford and London (Neurodegenerative Diseases Bank) was a follows: ‘Initial discussions on cost recovery should have taken place; the MRC banks should be considering how they can implement these approaches’.
Update on progress
It has always been MRC’s expectation that the banks would develop a model towards self-sustainable cost recovery. In 2014/15 and 2015/16, the ‘service support costs’ agreed by MRC’s Management Board (for collection, processing and diagnosis) was at least 25% below the actual value (based on the cost of the number of brains collected the previous year). The banks started exploring a variety of costing models used for acquiring tissue and a simple model for cost recovery (Table 1) has now been agreed by the banks and stakeholder charities (ARUK, AS, Autistica, MS Society, Parkinson’s UK).
The pricing structure has been designed to be transparent and easy to implement, but will be applied flexibly to allow the brain banks discretion to waive charges when providing for tissue for pilot studies or for researchers who routinely prepare or diagnose tissue sections locally in the banks.
Not all sample types listed are available from all banks, individual banks will advise on availability.
Table 1 Proposed pricing structure for tissue requests from the UK Brain Bank Network EXCLUDING VAT
Additional costs will be negotiated for more complex requests (e.g. particular stains or sample extraction).
Administration costs (including logging of request, database search, case retrieval, liaison with researcher and courier, booking out of samples.
Packaging typically £10 - £20 for most requests (unless collection is arranged by the requesting researcher).
Ongoing activities towards implementation:
• Legal agreements: each Bank is required to update its own local legal agreements because charging for tissue affects each bank's Terms of Reference differently.
• Developing and communicating guidance on implementation for the banks’ funders and the researchers who use the tissue, e.g. for including potential costs in grant applications.
• Developing minimum reporting and auditing requirements.
MRC’s Neurosciences and Mental Health Board approved the costing model. Communication documentation has been drafted to update:
• The MRC website and local websites of the banks
• Registered users of the database
• The Brain Bank staff (including information for invoicing and auditing)
• Charity stakeholders (to be specified by the charities).