About the UK Brain Banks Network
What is the UK Brain Bank Network?
The UK Brain Banks Network is an initiative, led by the MRC, to establish a coordinated national network of UK brain tissue resources (banks) for researchers to use.
The banks store post-mortem brain and central nervous system (CNS) tissue donated by the public for diagnosis and research into disorders. Advances in understanding genetics and many of the molecules that define brain function mean that more and more research questions can be answered from human brain tissue.
The UK Brain Banks Network supplies tissue samples to academic and industry researchers in the UK and abroad. All brain banks in the Network have approval to provide tissue samples to research projects and pilot studies. Approval is based on scientific merit and takes into account ethical issues (if peer review and ethics approval has not yet been obtained).
The banks work together to agree common standards of operation and to harmonise protocols for consent, tissue handling and storage, quality indicators and the application process for access to tissue samples.
Brain banks in the Network are distributed across the country and donors register with the brain bank nearest to them. Researchers can apply to use tissue from any bank, some of which specialise in different disease areas, for example: dementia, multiple sclerosis, Parkinson’s and autism.
An important early aim of the Network was to improve the supply of ‘healthy’ tissue that can be used in scientific studies as a control (or comparison) for tissue samples from patients with neurological disease.
To help achieve this, the MRC now funds two brain banks that focus on the collection of control tissue samples: the Sudden Death Brain and Tissue Bank at the University of Edinburgh and the Thomas Willis Brain Collection at the Oxford Biomedical Research Centre. Many samples of normal tissue are requested by researchers across the UK for a range of projects including large-scale genetic investigations into neurological diseases.
None of the banks in the UK Brain Bank Network collect foetal brains, however the banks do communicate with other resources, such as the MRC/Wellcome Trust Human Developmental Biology Resource, which collect voluntary donations of embryonic/fetal material.
Costs of Running a UK Brain Bank
The wider public, potential donors and researchers using the network are sometimes interested in understanding the processes and costs involved in the banking of brains for research. These encompass a wide range of activities from consenting and registering of donors, tissue processing and neuropathological assessment, data retrieval and linkage to the preparation and delivery of tissue to researchers. Additional costs arise from the maintenance of infrastructure and compliance with the administrative requirements of funders, research governance bodies, ethics committees and other regulatory agencies.
Many of the steps undertaken as part of running a brain bank are often not fully realised or understood. In order to provide further transparency, in 2018 the UK Brain Banks Network undertook a review of all costs across several of the UK brain banks. A summary of these costs is presented below. The average annual cost per brain for retrieval, storage and research access for 5 and 10 years respectively are also shown.
Brain donation costs:
Prior to receipt of brain: Consent process and brain collection
Consent and registration; liaison with family/mortuary/funeral director/GP/nursing home/consultant; brain transportation; funeral director and mortuary charges.
On receipt of brain: Brain dissection and preparation
Dissection and sampling of unfixed brain tissue; tagging and tracking of frozen tissue and sample tubes.
After fixation of brain: Tissue processing and neuropathological assessment
Macroscopic assessment; dissection; tissue processing; cutting of sections; staining; neuropathological assessment, bar coding and tracking of blocks and sections.
All associated documentation: Linking data to brain tissue samples
Obtaining GP notes; extracting clinical information; provision of reports and letters to next-of-kin/GP/consultant; entry of demographic, clinical and neuropathological information into database.
Average annual cost per brain of brain storage and provision of tissue for research:
Maintenance of infrastructure
Maintenance contracts for freezers, alarm service, on-call service for breakdowns; containers, dry ice, racks, freezer bags, tags, labels; staff time for tagging, storage, audit, disposal, data entry.
Preparation of tissue for researchers
Liaison with researchers; reviewing of tissue requests; MTAs; database searches; brain retrieval and dissection; cutting sections; sample packing and dispatch.
Including ethics committee reports; administration of research governance committee, management group, tissue request review group; reports to funders; HTA compliance and inspections.
Cost/brain of retrieval, storage and research access for 5 years: £9,530
Cost/brain of retrieval, storage and research access for 10 years: £16,630
Funding of the UK Brain Bank Network
Each bank receives funding from a variety of different sponsors e.g. the MRC, NHS Trusts, and UK-wide and smaller charities. The five UK charities supporting the Network are:
- Alzheimer’s Research UK
- Alzheimer’s Society
- Multiple Sclerosis Society
- Parkinson’s UK
The Steering Committee has oversight of the UK Brain Banks Network and provides scientific and strategic advice to the Director. It meets face-to-face twice yearly.
Members have expertise in a number of areas related to the Network’s activities including: neuroscience and epidemiology; ethics and law; brain and tissue banking in the UK and Europe; and non-professional representation. Meetings are attended by observers from different charities, industry, the Human Tissue Authority and NC3Rs.
Terms of Reference:
- To provide advice to the Director on the development of the UK Network of Brain Banks and to support him in achieving the goals of the Network.
- To ensure that strategies are in place to manage risk.
- To monitor implementation of the Network to ensure that:
- A code of practice is developed for all aspects of how the Network should operate.
- The manner of operation takes into account the interests of potential donors, their families and the wider public.
- The manner of operation takes account of the scientific needs of users (for example in the manner of freezing, storage and phenotyping, to enable DNA-based studies, proteomics and expression profiling).
- Protocols for brain banking align well with protocols for relevant clinical and other cohort studies and allow comparison with animal studies.
- The Network collects and makes available control brains and other brain material that is in short supply (psychiatric disorders, rare conditions etc.).
- A robust communications strategy is implemented.
- To consider issues identified by the Scientific User and Management Groups or any other part of the network.
- To receive regular reports on applications to deposit and access brain tissue from the network.
- To receive regular reports on the activities of the Network, including liaison with the relevant authorities (NIHR, devolved administrations, HTA, National Blood and Transplant, etc.).
- To report at least annually to the MRC and to provide an annual public report of activity.
- To review the membership and terms of reference of the Committee annually.
Professor Hugh Perry (University of Southampton)
- Professor Cathie Sudlow (UK Biobank, University of Edinburgh)
- Professor Maria Grazia Spillantini (University of Cambridge)
- Professor James Nicoll (BRAIN UK, University of Southampton)
- Dr Zeshan Ahmed (Lilly UK)
- Dr Inge Huitinga (Netherlands Brain Bank Director)
- Professor Peter Hutchinson (University of Cambridge)
- Professor Alan Thomas (Brains for Dementia Research)
- Dr Susan Wallace (University of Leicester)
- Partner charities (Alzheimer’s Research UK, Alzheimer’s Society, Autistica, Multiple Sclerosis Society, Parkinson’s UK)
- Dr Anthony Holmes (NC3Rs)
- Ms Jennifer Harris (Association of the British Pharmaceutical Industry)
- Dr Christopher Birkett (Human Tissue Authority)
- Dr Pamela Reid (Dementias Platform UK)
The Network Management Group has responsibility for the running of the network. The group is made up of the network Director, the principal investigators for each of the brain banks and a lay member. It meets twice yearly.
The Group agrees policy for dealing with requests, standard operating procedures, data sharing and the network’s tissue database, sample acquisition and storage. The Group keeps abreast of operational and technical developments and updates/advises the Steering Committee accordingly.
The Management Group and the Steering Committee have developed a framework to ensure that the network operates within the relevant human tissue and data protection legislation; research governance; GMC probity; ethical guidelines and health and safety guidelines. Sub-working groups are set-up to work through specific issues problems as they arise.
Professor Colin Smith (Director of the Network, MRC Brain and Tissue Banks in Edinburgh)
- Dr Kieren Allinson (Cambridge Brain Bank)
- Professor Safa Al-Sarraj (MRC London Neurodegenerative Diseases Brain Bank)
- Professor Olaf Ansorge (Thomas Willis Brain Collection)
- Professor Johannes Attems (Newcastle Brain Tissue Resource)
- Dr Zane Jaunmuktane (Queens Square Brain Bank for Neurological Disorders)
- Dr Robin Highley (Sheffield Brain Tissue Bank)
- Professor Federico Roncaroli (Manchester Brain Bank)
- Professor Richard Nicholas (Multiple Sclerosis Society Tissue Bank)
- Professor Steve Gentleman (Parkinson’s UK Brain Bank)
- Professor Seth Love (South West Dementia Brain Bank)
- Archbishop Douglas Lewins (Lay member)
In the next 12 months, activities will focus on the following:
- Increased communication activities and engaging new researchers
- Improving the database
- Working with the Dementias Platform UK to develop policies which align with the Brain Banks Network and implement the consenting of identified cohorts
- Identifying new opportunities/priority areas for brain donation/data capture