Governance of the UK Brain Banks network
Overview of governance and strategic links
Scientific Steering Committee
The Steering Committee has oversight of the operations of the UK Brain Banks network and will provide scientific and strategic advice to the Director. Members meet face-to-face twice yearly.
The membership provides expertise on areas related to the Network’s activities. This expertise includes ethics/law, brain and tissue banking in the UK and Europe, scientific input and non-professional representation. Meetings are attended by observers from different agencies and industry and the Chairman of the User Group.
- Chair: Professor Jonathan Montgomery (Professor of Health Care Law, University of Southampton and Chair, Hampshire Primary Care Trust)
- Emeritus Professor Jeanne E Bell (Neuropathology, Edinburgh)
- Professor Herbert Budka (Neuropathology, Medical University of Vienna)
- Professor Rory Collins (Medicine and Epidemiology, University of Oxford; Chief Executive, UK Biobank)
- Professor Bobbie Farsides (Clinical and Biomedical Ethics, Brighton and Sussex Medical School)
- Professor Paul Ince (Neuropathology, University of Sheffield)
- Dr Brian Clark (Chief Executive Officer, onCore UK)
- Mr John Cooper (non-professional representative)
Terms of Reference for the UK Brain Banks Network, Scientific User Group
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.
User Group
A User Group 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.
Membership
- Professor Paul Francis, King’s College London (Chair);
- Professor Paul Harrison, University of Oxford;
- Professor David Rubinsztein, University of Cambridge;
- Professor Richard Reynolds, Imperial College, London;
- Professor Chris Miller, Institute of Psychiatry;
- Dr Klaus Schmierer, Barts and the London School of Medicine and Dentistry, London
Terms of Reference for the UK Brain Banks Network Management Group
1. To help the Network develop a strategy for the collection of human brain tissue that is of high quality and fit for current and future research use
2. To advise the Network on standards for quality in stored human brain tissue
3. To advise the Network on existing national research activities and technical developments and how the Network can meet the needs of these activities
4. To advise the network on the needs for control tissues and how the Network’s proposed strategies for collection might meet these needs.
5. To advise the Network on the accompanying data required by researchers to allow the best use of tissue samples in their research.
Management Group
Terms of Reference for the UK Brain Banks Network Steering Committee
1. The Management Group will comprise the Network Director and the Principal Investigator for each of the Brain Banks within the Network, together with a lay member.
2. The Management Group has responsibility for the running of the Network. The Management Group will agree policies for dealing with requests, standard operating procedures, data sharing and the construction of a common database, sample acquisition and storage.
3. The Management Group is jointly responsible with the Steering Group for developing a framework to ensure that the Network operates within the relevant Human Tissue Legislation, Research Governance, GMC Probity and Ethical Guidelines, Data Protection Legislation and the relevant Health and Safety Guidelines.
4. The Management Group will keep abreast of technical developments that could improve the operation of the Network and advise the Steering Committee accordingly.
5. The Management Group will consider the options for a Donor Programme within the Network and report to the Steering Committee.
6. The Management Group will meet on a 6 monthly basis or as frequently as is necessary, determined by the Management Group itself. An agenda will be prepared by the Director and circulated before the meeting. Papers including the Minutes will be made available to the Steering Group and to MRC. The Management Group will provide for the Steering Group regularly updated audits of the operation of the Network.
7. The Management Group will be responsible for ensuring that an annual report is prepared for the activities of the Network, for approval by the Steering Group. Such annual reports will be placed on the Network website.