BRain Archive Information Network (BRAIN UK)
Lead Research Organisation:
University of Southampton
Department Name: Medicine
Abstract
The retention of brains and brain tissue samples following post mortem examinations came to have a very high public profile about 5 years ago, and this resulted in a considerable amount of adverse publicity. Now, however, the process has been scrutinised and a new law has been passed in the form of the Human Tissue Act. This opens the way to the legal and ethical use of retained brain tissue samples for research purposes for the potential benefit of all. It is to be hoped that BRAIN UK will be seen as a positive outcome of the close public scrutiny of the retention and use of human tissues.
Technical Summary
A recent MRC workshop re-iterated the continuing need for study of human brain tissue to further understand neurological disease. This proposal, submitted on behalf of the British Neuropathological Society, is to establish a national database of human brain and other relevant tissue which has been collected and archived following diagnosis over a period of 30-40 years, according to guidelines of the Royal College of Pathologists. Tissue archived before October 2006, referred to as ?existing holdings?, is now available for research according to the Human Tissue Act 2004, provided cases are anonymised and ethical approval is obtained. To date there has been no nationwide systematic documentation or exploitation of this resource. A pilot survey of 5 regional neuropathology services has revealed 28,000 cases being potentially available, which extrapolates to approximately 150,000 cases in the UK. The collections comprise predominantly paraffin wax-embedded tissue which is ideal for study of disease phenotypes in terms of morphology and specific proteins. In many cases nucleic acids can also be studied: genomic DNA to study the influence of genetic variation on disease risk and phenotype; mitochondrial DNA; and the genetics of micro-organisms. A major benefit of these collections is that they cover neurological disorders comprehensively, contain large numbers of common disorders, useful numbers of rare disorders and non-disease controls. As such this resource is complementary to existing disease-specific formal brain banks. The collections represent decades of work and it would take a long time to collect such tissue prospectively, and indeed it may be entirely impracticable due to recent changes in autopsy practice.
This proposal is to perform an audit to document the tissue available and to set up a web-based access system containing a database of disease categories, numbers of cases available, location of tissue and contact details. We have confirmation of support from almost all neuropathology services in the UK. This is an economical way of unlocking the potential in this resource which is of global significance.
This proposal is to perform an audit to document the tissue available and to set up a web-based access system containing a database of disease categories, numbers of cases available, location of tissue and contact details. We have confirmation of support from almost all neuropathology services in the UK. This is an economical way of unlocking the potential in this resource which is of global significance.
Organisations
- University of Southampton, United Kingdom (Lead Research Organisation)
- Leeds Teaching Hospitals NHS Trust, Leeds (Collaboration)
- South Tees Hospitals NHS Foundation Trust, Middlesbrough (Collaboration)
- Lancashire Teaching Hospitals NHS Foundation Trust, Preston (Collaboration)
- University Hospitals Birmingham NHS Foundation Trust, Birmingham (Collaboration)
- North Bristol Nhs Trust, United Kingdom (Collaboration)
- Nottingham University Hospital NHS Trust, Nottingham (Collaboration)
- King's College University Hospital NHS Trust (Collaboration)
- Imperial College Healthcare NHS Trust (Collaboration)
- Cambridge University Hospitals NHS Foundation Trust, Cambridge (Collaboration)
- Great Ormond Street Hospital (GOSH) (Collaboration)
- Barking, Havering and Redbridge University Hospitals NHS Trust (Collaboration)
- Royal Free London NHS Foundation TRust, United Kingdom (Collaboration)
- Cardiff & Vale University Health Board, United Kingdom (Collaboration)
- University Hospital Southampton NHS Foundation Trust, Southampton (Collaboration)
- Barts Health NHS Trust, London (Collaboration)
- NHS Greater Glasgow and Clyde (NHSGGC) (Collaboration)
- Salford Royal NHS Foundation Trust, Greater Manchester (Collaboration)
- Medical Research Council (Collaboration)
- University College London Hospital (UCLH) NHS Foundation Trust (Collaboration)
- St George's Healthcare NHS Trust (Collaboration)
- The Walton Centre NHS Foundation Trust, Fazakerley (Collaboration)
- Plymouth Hospitals NHS Trust, Plymouth (Collaboration)
- Hull and East Yorkshire Hospitals NHS Trust (Collaboration)
- NHS Lothian (Collaboration)
- Newcastle upon Tyne Hospitals NHS Foundation Trust (Collaboration)
- Oxford University Hospitals NHS Foundation Trust (Collaboration)
- Sheffield Teaching Hospitals NHS Foundation Trust (Collaboration)
People |
ORCID iD |
| James Nicoll (Principal Investigator) | |
| David Hilton (Co-Investigator) |
Publications
Pickles JC
(2021)
A case series of Diffuse Glioneuronal Tumours with Oligodendroglioma-like features and Nuclear Clusters (DGONC).
in Neuropathology and applied neurobiology
Adams CL
(2020)
A Rapid Robust Method for Subgrouping Non-NF2 Meningiomas According to Genotype and Detection of Lower Levels of M2 Macrophages in AKT1 E17K Mutated Tumours.
in International journal of molecular sciences
Chadda KR
(2021)
A rare case of paediatric astroblastoma with concomitant MN1-GTSE1 and EWSR1-PATZ1 gene fusions altering management.
in Neuropathology and applied neurobiology
Jaunmuktane Z
(2021)
Alzheimer's disease neuropathological change three decades after iatrogenic amyloid-ß transmission.
in Acta neuropathologica
Arena JD
(2020)
Astroglial tau pathology alone preferentially concentrates at sulcal depths in chronic traumatic encephalopathy neuropathologic change.
in Brain communications
Thom M
(2016)
Audit of practice in sudden unexpected death in epilepsy (SUDEP) post mortems and neuropathological findings.
in Neuropathology and applied neurobiology
Williams MR
(2015)
Axonal myelin increase in the callosal genu in depression but not schizophrenia.
in Psychological medicine
Cortese A
(2019)
Biallelic expansion of an intronic repeat in RFC1 is a common cause of late-onset ataxia.
in Nature genetics
Roberts SL
(2020)
Bim contributes to the progression of Huntington's disease-associated phenotypes.
in Human molecular genetics
| Description | Project grant G1100578 |
| Amount | £352,784 (GBP) |
| Funding ID | G1100578 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2011 |
| End | 10/2015 |
| 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 | 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 |
| 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 |
| 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 | 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 |
| URL | http://www.brain-uk.org |
| 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 | 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 | 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 |