Brain Banks in the UK

About the UK Brain Banks Network

What is the UK Brain Bank Network?

The UK Brain Bank 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 Bank 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.

The Network, directed by Professor Seth Loveopens in new window, is overseen by a Steering Committee  and is managed by a Network Management Group.  A User Group, made up of researchers from academia and industry, provides advice to both the Management Group and the Steering Committee, to help ensure that the needs of scientific users are met by the network.

Brain banks in the UK Brain Bank Network

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 Edinburghopens in new window and the Thomas Willis Brain Collection at the Oxford Biomedical Research Centreopens in new window. 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 Resourceopens in new window, which collect voluntary donations of embryonic/fetal material.

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 UKopens in new window
• Alzheimer’s Societyopens in new window
• Autisticaopens in new window
• Multiple Sclerosis Societyopens in new window
• Parkinson’s UKopens in new window

Steering Committee

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 Authorityopens in new window and NC3Rsopens in new window.   

Terms of Reference:

1. 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.
2. To ensure that strategies are in place to manage risk.
3. 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 and 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.

4. To consider issues identified by the Scientific User and Management Groups or any other part of the network.
5. To receive regular reports on applications to deposit and access brain tissue from the network.
6. 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).
7. To report at least annually to the MRC and to provide an annual public report of activity.
8. To review the membership and terms of reference of the Committee annually.

Chair

Professor Chris Kennard, (Professor of Clinical Neurology, University of Oxford)

Members

• Professor Herbert Budka (Neuropathology, Medical University of Vienna)
• Professor Cathie Sudlow (Neurology and Clinical Epidemiology, University of Edinburgh, UK Biobank)
• Professor Bobbie Farsides (Clinical and Biomedical Ethics, Brighton and Sussex Medical School)
• Professor Maria Grazia Spillantini, Neurology, University of Cambridge
• Professor Jonathan Montgomery (Health Care Law, University College London)
• Professor James Nicoll (BRAIN UK, University of Southampton)
• Dr Anthony Holmes (NC3Rsopens in new window)
• Dr David Collier (Discovery Neuroscience, Lilly)

Observers

• Partner charities (Alzheimer’s Research UKopens in new window, Alzheimer’s Societyopens in new window, Autisticaopens in new window, Multiple Sclerosis Societyopens in new window, Parkinson’s UKopens in new window)
• Mrs Yvonne Wilding (Association of the British Pharmaceutical Industryopens in new window)
• Other - Human Tissue Authorityopens in new window and ad hoc observers for specific items

The Steering Committee has its own terms of reference:

more text

Network Management Group

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 within the network, together with 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 and 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.

Chair

Professor Seth Love

Members

• Dr Kieren Allinson (Cambridge Brain Bankopens in new window)
• Professor Safa Al-Sarraj (MRC London Neurodegenerative Diseases Brain Bankopens in new window (KCL)
• Professor Olaf Ansorge (Thomas Willis Collectionopens in new window (Oxford)
• Professor Johannes Attems (Newcastle Brain Tissue Resourceopens in new window)
• Professor Steve Gentleman (Parkinson’s UK Brain Bankopens in new window)
• Professor Janice Holton (Queens Square Brain Bank for Neurological Disordersopens in new window)
• Professor Paul Ince (Sheffield Brain Tissue Bankopens in new window)
• Archbishop Douglas Lewis (Lay member)
• Professor David Mann (Manchester Brain Bankopens in new window)
• Professor Richard Reynolds (Multiple Sclerosis Society Tissue Bankopens in new window)
• Professor Colin Smith (MRC Brain and Tissue Banks in Edinburgh)

Workshops

A pilot training day for brain bank managers and other key staff (e.g. nurses or administrators) was arranged in October 2014.  The training day focused on the legal and ethical issues that the banks need to consider in accepting or declining donations with key talks from legal and ethical experts, and break out discussions to evaluate outcomes of real life scenarios, all of which created networking opportunities. Based on the positive feedback from the meeting, another training day is planned for autumn 2015 which will focus on issues around implementing the donation strategy and working with DPUK.  MRC has joined with Brains for Dementia Research (BDR) to organise and fund this event.

Donation strategy for the Network

In October 2013, the MRC ran a workshop to determine a donation strategy for the Network. Workshop report and future donation strategy (PDF, 284KB)

What next for the Network?

In the next 12 months, activities will focus on the following:

• Increased communication activities and engaging new researchers
• Improving the database, minimum data capture and implementing LIMS
• Implementing the cost recovery model
• 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  e.g. TB