BRAIN UK: accessing NHS tissue archives for neuroscience research (2015-2019)
Lead Research Organisation:
University of Southampton
Department Name: Clinical and Experimental Sciences
Abstract
Neurological diseases cause a substantial and increasing personal, social and economic burden. Although there have been exceptions, there is increasing frustration at the limitations of learning from animal models, emphasising the importance of studying human tissue. Neuropathologists work in NHS hospitals examining samples from the brain and related tissues derived from operations (biopsies) or post mortem examinations. Their job is to identify abnormalities, make a diagnosis and try to understand how the abnormalities arise. Neuropathology has existed as a specialty in the UK for 40-50 years and, as a consequence of this work, substantial archives of diagnostically verified tissue have been established nationwide. These archives contain a wealth of tissue from a great variety of neurological conditions, including common conditions such as stroke, head injury, tumours, infections, psychiatric disorders, developmental disorders and many rare conditions, and represent an underutilised resource for research. BRAIN UK (the UK BRain Archive Information Network) networks the tissue archives of neuropathology departments based in 26 regional NHS Clinical Neuroscience Centres to form a virtual brain bank, acting as a "matchmaker" linking researchers needing tissue to the appropriate samples. Through BRAIN UK researchers can gain access to >400,000 samples from a wide range of diseases affecting the brain, spinal cord, nerve, muscle and eye. BRAIN UK has ethical approval which covers the majority of projects, saving the researchers considerable time as they would otherwise have to obtain this approval independently. Over the past 4 years BRAIN UK has supported 48 research projects in many centres around the UK and overseas. In the coming 4 years we want to continue to provide tissue to researchers from existing resources and add newly obtained samples of which >16,000 are becoming available each year. We also aim to gather the results of researchers' studies performed on tissue obtained through BRAIN UK to form a central register of findings which will benefit new researchers wanting to perform new studies on these tissue samples. Finally, we will link BRAIN UK with UK Biobank, which has 500,000 intensively studied participants from the general population, in order to learn more about the origins of neurological disease. As far as we are aware, the BRAIN UK network is unique in the world and is very economical as it makes use of tissue samples already being stored in NHS archives which would otherwise be unused and unavailable to researchers.
Technical Summary
Formal prospective brain banks mainly focus on neurodegenerative disease and do not cover other common disorders such as stroke, head injury, psychiatric and developmental disorders. There already exists as a result of decades of diagnostic work a vast resource of well-characterised human tissue in NHS Clinical Neuroscience centres. BRAIN UK is a collaborative virtual brain bank, linking together 26 regional centres, covering approx. 90% of the UK population, and the Corsellis Collection, with its large collection of psychiatric disorders such as schizophrenia. Access is provided to tissue from >60,000 post mortem examinations and >400,000 samples from the living (biopsies) permitting very large studies on common disorders, and particularly useful for uncommon disorders. It allows research into the many neurological diseases not covered by dedicated brain banks. Researchers obtaining tissue through BRAIN UK do not need to obtain their own ethical approval, saving approx 6 months per project. 48 applications have been supported (2011-2014) encompassing a wide variety of conditions including stroke, epilepsy, schizophrenia, tumours, disorders of childhood and ageing. In the coming 4 years we aim to (i) continue to supply neuroscience researchers with well characterised human brain tissue samples (ii) add newly obtained tissue samples which are being accumulated at a rate of >16,000/year (iii) establish a system to gather together data generated by researchers on samples provided by BRAIN UK, promoting interactions and collaborations, and (iv) establish links between BRAIN UK and UK Biobank, a resource with rich data on 500,000 participants in the general population to further understanding on the origins of neurological diseases. As it makes use of existing samples BRAIN UK represents excellent value for money. The scale and scope of BRAIN UK is unprecedented and archived tissue that would otherwise be unused has supported important research projects.
Planned Impact
The following groups will benefit from BRAIN UK, in addition to the academic beneficiaries described above:
Patients - engaging patients with neurological conditions with research in relation to use of their tissue samples and the consenting process. The output of research undertaken using tissue samples provided through BRAIN UK will ultimately benefit patients with neurological conditions.
Third sector - achieving the aims of the brain tumour charity brainstrust by partnering with BRAIN UK to further research into brain tumours.
Commercial sector - provision of tissue samples to industry (e.g. GE Healthcare for the development of Multiomyx technology).
NHS regional Clinical Neuroscience services - forming the BRAIN UK network has strengthened relationships between centres, highlighted the benefits of interactions on a national scale and enabled some otherwise non-research active NHS staff to contribute to research.
UK biobank - providing access to tissue samples from UK biobank participants.
Education - BRAIN UK is particularly useful in providing access to tissue samples for small studies performed as projects by undergraduate students of science and medicine as it lowers the hurdles otherwise required to use human tissue.
Global perspective - BRAIN UK presentations at international conferences help to convey the reality that the UK leads the way in healthcare research networks.
Patients - engaging patients with neurological conditions with research in relation to use of their tissue samples and the consenting process. The output of research undertaken using tissue samples provided through BRAIN UK will ultimately benefit patients with neurological conditions.
Third sector - achieving the aims of the brain tumour charity brainstrust by partnering with BRAIN UK to further research into brain tumours.
Commercial sector - provision of tissue samples to industry (e.g. GE Healthcare for the development of Multiomyx technology).
NHS regional Clinical Neuroscience services - forming the BRAIN UK network has strengthened relationships between centres, highlighted the benefits of interactions on a national scale and enabled some otherwise non-research active NHS staff to contribute to research.
UK biobank - providing access to tissue samples from UK biobank participants.
Education - BRAIN UK is particularly useful in providing access to tissue samples for small studies performed as projects by undergraduate students of science and medicine as it lowers the hurdles otherwise required to use human tissue.
Global perspective - BRAIN UK presentations at international conferences help to convey the reality that the UK leads the way in healthcare research networks.
Organisations
- University of Southampton (Lead Research Organisation)
- BRAINSTRUST (Collaboration)
- SOUTH TEES HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Lancashire Teaching Hospitals NHS Foundation Trust (Collaboration)
- Plymouth Hospitals NHS Trust (Collaboration)
- OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- THE WALTON CENTRE NHS FOUNDATION TRUST (Collaboration)
- King's College University Hospital NHS Trust (Collaboration)
- CAMBRIDGE UNIVERSITY HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Medical Research Council (MRC) (Collaboration)
- NORTH BRISTOL NHS TRUST (Collaboration)
- NHS Greater Glasgow and Clyde (NHSGGC) (Collaboration)
- UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST (Collaboration)
- Imperial College Healthcare NHS Trust (Collaboration, Project Partner)
- Great Ormond Street Hospital (GOSH) (Collaboration)
- Royal Free London NHS Foundation Trust (Collaboration, Project Partner)
- SALFORD ROYAL NHS FOUNDATION TRUST (Collaboration)
- NHS Lothian (Collaboration, Project Partner)
- Leeds Teaching Hospitals NHS Trust (Collaboration, Project Partner)
- University College London Hospitals NHS Foundation Trust (Collaboration)
- Hull and East Yorkshire Hospitals NHS Trust (Collaboration)
- UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST (Collaboration)
- St George's Healthcare NHS Trust (Collaboration)
- Brain Tumour Research (Collaboration)
- BARTS HEALTH NHS TRUST (Collaboration)
- Barking, Havering and Redbridge University Hospitals NHS Trust (Collaboration)
- NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST (Collaboration)
- Nottingham University Hospitals NHS Trust (Collaboration)
- CARDIFF AND VALE UNIVERSITY HEALTH BOARD (Collaboration)
- Sheffield Teaching Hospitals NHS Foundation Trust (Collaboration, Project Partner)
- Walton Centre (Project Partner)
- Great Ormond Street Hospital (Project Partner)
- University Hospitals Birmingham NHS Foundation Trust (Project Partner)
- Barts Health NHS Trust (Project Partner)
- NHS Greater Glasgow and Clyde (Project Partner)
- Oxford University Hospitals NHS Trust (Project Partner)
- University College London (Project Partner)
- University of Hull (Project Partner)
- Nottingham University Hospitals NHS Trust (Project Partner)
- University of Bristol (Project Partner)
- Lancashire Teaching Hospitals NHS Foundation Trust (Project Partner)
- North Bristol NHS Trust (Project Partner)
- St George's, University of London (Project Partner)
- West London Mental Health NHS Trust (Project Partner)
- South Tees Hospitals NHS Foundation Trust (Project Partner)
- Cardiff and Vale University Health Board (Project Partner)
- Salford Royal NHS Foundation Trust (Project Partner)
- King's College Hospital (Project Partner)
- BHR University Hospitals NHS Trust (Project Partner)
- University Hospital Coventry (Project Partner)
- University of Cambridge (Project Partner)
- brainstrust (Project Partner)
- University of Edinburgh (Project Partner)
People |
ORCID iD |
| James Nicoll (Principal Investigator) | |
| David Hilton (Co-Investigator) |
Publications
Pickles JC
(2018)
CNS embryonal tumours: WHO 2016 and beyond.
in Neuropathology and applied neurobiology
Smith DH
(2021)
COllaborative Neuropathology NEtwork Characterizing ouTcomes of TBI (CONNECT-TBI).
in Acta neuropathologica communications
Song H
(2022)
Concussion leads to widespread axonal sodium channel loss and disruption of the node of Ranvier.
in Acta neuropathologica
Ferluga S
(2020)
Constitutive activation of the EGFR-STAT1 axis increases proliferation of meningioma tumor cells.
in Neuro-oncology advances
Zheng T
(2021)
Cross-Species Genomics Reveals Oncogenic Dependencies in ZFTA/C11orf95 Fusion-Positive Supratentorial Ependymomas.
in Cancer discovery
Apps JR
(2020)
CTNNB1 mutations are clonal in adamantinomatous craniopharyngioma.
in Neuropathology and applied neurobiology
Hayhurst H
(2018)
Dissecting the neuronal vulnerability underpinning Alpers' syndrome: a clinical and neuropathological study
in Brain Pathology
Bongaarts A
(2022)
Distinct DNA Methylation Patterns of Subependymal Giant Cell Astrocytomas in Tuberous Sclerosis Complex.
in Cellular and molecular neurobiology
Sahm F
(2017)
DNA methylation-based classification and grading system for meningioma: a multicentre, retrospective analysis.
in The Lancet. Oncology
Capper D
(2018)
DNA methylation-based classification of central nervous system tumours.
in Nature
| Description | Attendance at the All Party Parliamentary Group on Brain Tumours |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Description | University of Southampton Information Security Policy |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Citation in other policy documents |
| Description | Award to support the extension of the activities of BRAIN UK |
| Amount | £18,378 (GBP) |
| Organisation | British Neuropathological Society |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2020 |
| End | 12/2023 |
| Description | Brain UK biopsy extension |
| Amount | £90,000 (GBP) |
| Funding ID | 512921101 |
| Organisation | Brainstrust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2013 |
| End | 07/2016 |
| Description | Bridging funding from "Brain Tumour Research" |
| Amount | £27,031 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 09/2017 |
| Description | Continuation of funding for BRAIN UK 2022/23 |
| Amount | £137,807 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2022 |
| End | 12/2023 |
| Description | Continuation of funding for Biopsy Extension of BRAIN UK 2017/18 |
| Amount | £50,000 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2017 |
| End | 09/2018 |
| Description | Continuation of funding for Biopsy Extension of BRAIN UK 2018/19 |
| Amount | £37,500 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2018 |
| End | 06/2019 |
| Description | Continuation of funding for Biopsy Extension of BRAIN UK 2019/20 |
| Amount | £45,735 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2019 |
| End | 12/2020 |
| Description | Continuation of funding for Biopsy Extension of BRAIN UK 2021 |
| Amount | £36,000 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 09/2022 |
| Description | Continuation of funding for Biopsy Extension of BRAIN UK 2021/22 |
| Amount | £60,000 (GBP) |
| Organisation | Brain Tumour Research |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2021 |
| End | 09/2022 |
| Description | Funding for BRAIN UK (Covid) |
| Amount | £17,000 (GBP) |
| Organisation | United Kingdom Research and Innovation |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 09/2021 |
| Description | MRC UK Brain Banks 12 month additional costs |
| Amount | £57,500 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2020 |
| End | 10/2021 |
| Title | BRAIN UK Database |
| Description | BRAIN UK continues to collect a prescribed linked-anonymised dataset relating to both post mortem and surgical cases archived by participating centres. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2010 |
| Provided To Others? | Yes |
| Impact | The BRAIN UK database is used to identify cases of interest to the research community and to aid participating centres in the acquisition of these cases for research purposes. The database has also provided information relating to the incidence of specified diseases for epidemiological purposes. |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Barking, Havering and Redbridge University Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Barts Health NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Cambridge University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Cardiff and Vale University Health Board |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Great Ormond Street Hospital (GOSH) |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Hull and East Yorkshire Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Imperial College Healthcare NHS Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | King's College University Hospital NHS Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Lancashire Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Leeds Teaching Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | NHS Greater Glasgow and Clyde (NHSGGC) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | NHS Lothian |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | North Bristol NHS Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Nottingham University Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Oxford University Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Plymouth Hospitals NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Royal Free London NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Salford Royal NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | Sheffield Teaching Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | South Tees Hospitals NHS Foundation Trust |
| Department | Department of Cellular Pathology |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | St George's Healthcare NHS Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | The Walton Centre NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | University College London Hospitals NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | University Hospital Southampton NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | BRAIN UK network of participating neuropathology centres |
| Organisation | University Hospitals Birmingham NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Formation of BRAIN UK |
| Collaborator Contribution | Collaboration to provide data about archives and to satisfy requests for tissue. Supplying of tissue to ethically approved studies. |
| Impact | Formation of BRAIN UK database. Provision of brain tissue for research. |
| Start Year | 2008 |
| Description | Brain Tumour Research |
| Organisation | Brain Tumour Research |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We have provided expertise relating to the establisment of a 'virtual brainbank' to utilise extant and future surgical specimens maintained by UK neuropathology centres for high quality research. |
| Collaborator Contribution | Brain Tumour Research provides funding for 1 x BRAIN UK post (MSA Grade 4) to enable the inclusion of neurosurgical tumour biopsies. |
| Impact | Current establisment of protocols and procedures relating to BRAIN UK 'virtual brainbank' dedicated to surgical specimens. This primarily relates to obtaining mandatory regulatory approvals both nationally and locally. |
| Start Year | 2013 |
| Description | Brain Tumour Research |
| Organisation | Brainstrust |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | We have provided expertise relating to the establisment of a 'virtual brainbank' to utilise extant and future surgical specimens maintained by UK neuropathology centres for high quality research. |
| Collaborator Contribution | Brain Tumour Research provides funding for 1 x BRAIN UK post (MSA Grade 4) to enable the inclusion of neurosurgical tumour biopsies. |
| Impact | Current establisment of protocols and procedures relating to BRAIN UK 'virtual brainbank' dedicated to surgical specimens. This primarily relates to obtaining mandatory regulatory approvals both nationally and locally. |
| Start Year | 2013 |
| Description | MRC UK Brain Banks Network |
| Organisation | Medical Research Council (MRC) |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | BRAIN UK compliments the tissue that the other brain banks within the MRC network provide. BRAIN UK (through data supplied by the participating neuropathology centres) have identified very useful quantities of rare neurological diseases and disorders as well as larger quantities of common and medically important disorders (such as stroke) and tumours that are currently not catered for by existing brain banking facilities. Participation at meetings and training events ensures that BRAIN UK's experiences of working with researchers are represented and that the brain banks work towards common aims. |
| Collaborator Contribution | By 2015 BRAIN UK collaborating centres contributed data relating to over 130,000 available research cases to the centralised BRAIN UK database. |
| Impact | No formal outcomes. |
| Start Year | 2009 |
| Description | Annual Report to Research Ethics Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Annual report and update submitted to South Central - Southampton B Research Ethics Committee (formerly Southampton and South West Hampshire Research Ethics Committee B). Allowed study to continue. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013,2014,2015,2016,2017,2018,2019,2020,2021,2022,2023 |
| Description | Annual Report to the British Neuropathological Society |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Brief update delivered to the British Neuropathological Society Business Meeting as part of their annual meeting. Main aim is to keep the Neuropathology community aware of the work of BRAIN UK with the intention to keep receiving their support through the supply of data and tissue and for them to recommend the service to researchers. Also, to maintain engagement with neuropathologists and researchers and ensure that we are meeting their current and future needs. Encouraged participation in BRAIN UK |
| Year(s) Of Engagement Activity | 2011,2012,2013,2014,2015,2016,2017,2018,2019,2020,2021,2022,2023 |
| Description | Annual report to the BRAIN UK Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Annual meeting of BRAIN UK committee. Metrics data supplied to members to give an insight into how study is progressing, intention is to provide a support and challenge environment. As the study and the format of the meeting is well established good level of discussion around direction of the study with supportive suggestions for future direction and practical offers of support. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013,2014,2015,2016,2017,2018,2019,2020 |
| Description | Article in Brain Tumour Research Magazine "Believe" |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Article in Brain Tumour Research Believe Magazine, Issue 20, Autumn 2021. "BRAIN UK: A Game changing resource for Brain Tumour Research" |
| Year(s) Of Engagement Activity | 2021 |
| Description | Article published the Royal College of Pathologists College Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Article published in January 2023 issue of the Royal College of Pathologists College Bulletin: "BRAIN UK: facilitating research with NHS diagnostic archives" |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.rcpath.org/profession/publications/college-bulletin/january-2023.html |
| Description | BRAIN UK Leaflets |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Production of BRAIN UK Leaflets in 2017. Around 1000 leaflets distributed via Neuropathology Centres, conferences and charity stands promoting the BRAIN UK service. No reported outcomes for the leaflets yet. In addition, promotional mugs delivered to local contacts in Neuropathology Centres and key interested persons, such as committee members. These sparked discussions about BRAIN UK and helped to support participating centre's engagement with the project. Revised and reprinted leaflets in 2022/23 for distribution in Participating Centres and at Conferences. |
| Year(s) Of Engagement Activity | 2017,2018,2019,2020,2022,2023 |
| Description | BRAIN UK Twitter Account |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We have been working to increase our Twitter profile. We have steadily gained new followers and are increasing our engagement with our study PIs and funders over the platform. |
| Year(s) Of Engagement Activity | 2021,2022,2023 |
| URL | https://twitter.com/brainukorg?lang=en-GB |
| Description | BRAIN UK Website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Creation and updates of BRAIN UK website. Major redesign in 2015 to engage researchers, participating centres and the general public. Further improvements made in 2019 to make navigation easier and the website more visual/engaging. In 2020/21 changes made to make lay summaries easier to navigate and updated homepage to make more engaging. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013,2014,2015,2016,2017,2018,2019,2020,2021,2022,2023 |
| URL | http://www.brain-uk.org |
| Description | BRAIN UK, the National Brain Tumour Bank Network Three Years On; Oncology News, Vol 11, Issue 5, Nov/Dec 2016. ISSN 1751-4975 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Article published highlighting achievements of the first three years of the study's extension to include surgical material. |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://issuu.com/oncologynews/docs/011116 |
| Description | Linkage from MRC Brain Banks Network website |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Link from the MRC Brain Banks Network http://www.mrc.ac.uk/research/facilities/brain-banks/access-for-research/ to promote the usage of BRAIN UK. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013,2014,2015,2016,2017,2018,2019,2020 |
| URL | http://www.mrc.ac.uk/research/facilities/brain-banks/access-for-research/ |
| Description | Linkage from Tessa Jowell Academy webpage |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Information about BRAIN UK listed on Tessa Jowell Academy webpage under resources and research. |
| Year(s) Of Engagement Activity | 2022,2023 |
| URL | https://www.tessajowellbraincancermission.org/strategic-programmes/academy-info/ |
| Description | Participation in Brain Tumour Research Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Around 50 researchers and charity members attended an annual research workshop with the aim raising awareness of their activities and promoting collaborations and closer working with involved charities. |
| Year(s) Of Engagement Activity | 2016,2017 |
| Description | Participationin the Brain Tumour Research campaign to improve funding in to brain tumours |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Currently still involved in the Brain Tumour Research campaign to try and improve funding into brain tumours. Involvement has included submission used as evidence for the House of Commons Petitions Committee and attendance at meetings such as the All Party Parliamentary Group (APPG) on Brain Tumours meetings at the raise awareness of the issues facing the brain tumour community in order to improve research, diagnosis, information, support, treatment and care outcomes. |
| Year(s) Of Engagement Activity | 2016,2017 |
| Description | Platform presetation to British Neuropathological Society Conference (London) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Platform presentation to describe the latest activities of BRAIN UK to conference participants to raise awareness and support for project. Questions and discussion afterwards and enquiries for applications for tissues. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://onlinelibrary.wiley.com/doi/10.1111/nan.2016.42.issue-S1/issuetoc |
| Description | Poster at Southampton Neuroscience Group (SoNG) Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster to promote BRAIN UK project locally Interest from the research community resulting in applications from local collaborators. |
| Year(s) Of Engagement Activity | 2013,2014,2015 |
| Description | Poster presentation at European Congress of Neuropathology 2021 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Poster detailing BRAIN UK presented at the European Congress of Neuropathology held virtually in 2021. |
| Year(s) Of Engagement Activity | 2012,2021 |
| Description | Poster promoting BRAIN UK - British Neuropathological Society Meetings |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Type Of Presentation | poster presentation |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A poster was written and displayed at the 2009, 2014 and 2015 British Neuropathological Society Meetings at the Institute for Child Health in London. The poster was designed to update BNS of the activities of BRAIN UK and to advertise our intended service. It was also an opportunity to receive feedback and field questions from interested parties. BRAIN UK staff is attending the BN meeting every year to promote the brain bank by interacting with the attendees and providing leaflets containing BRAIN UK information. 'The poster presentation at the 2009 and 2014 British Neuropathological Society Meetings enabled BRAIN UK to inform participating centres of our progress up to that time and to ensure their continued involvement and it also gave BRAIN UK an opportunity to enhance awareness of our aims and objectives amongst the wider research community.' |
| Year(s) Of Engagement Activity | 2009,2014,2015 |
| Description | Presentation at Brain Tumour Research - Research workshop |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Platform Presentation at Brain Tumour Research Workshop highlighting current studies and encouraging collaboration across Brain Tumour Research "Centres of Excellence". Presented in 2016 and 2022 |
| Year(s) Of Engagement Activity | 2016,2022 |
| Description | Presentation at British Neuro-Oncology Society Annual Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Platform presentation (2014, 2016) to describe the biopsy extension to conference participants to raise awareness and support for project. Questions and discussion afterwards and two enquiries for applications for tissues and additional centre request to participate in the project. Informal enquiries regarding the availability of tissue for research purposes. |
| Year(s) Of Engagement Activity | 2014,2016 |
| Description | Presentation at Research Symposium for Supporters |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation highlighting the work of BRAIN UK. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Promotion of Corsellis Collection for "All in the Mind" on Radio 4 |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Involvement with making of an "All in the Mind" Radio 4 programme , highlighting the closure the Corsellis Collection and the benefits of brain banking and research on human tissue. This resulted in further press interest and funding opportunities. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.bbc.co.uk/programmes/b06r5d0h |
| Description | Update Report to BRAIN UK Participating Centres |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Update of progress and invitations for applications for research projects disseminated amongst the UK Neuropathologist community. Given the short period of time between the time of writing and the dissemination of information, there has been no discernable impact to date. |
| Year(s) Of Engagement Activity | 2011,2012,2013,2014,2015,2016,2017,2018,2019,2020,2021,2022,2023 |