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.

Organisations

Publications

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Bödör C (2020) Molecular Subtypes and Genomic Profile of Primary Central Nervous System Lymphoma. in Journal of neuropathology and experimental neurology

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Durnford A (2015) Haemoglobin scavenging after subarachnoid haemorrhage. in Acta neurochirurgica. Supplement

 
Description Project grant G1100578
Amount £352,784 (GBP)
Funding ID G1100578 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2011 
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
 
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
 
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
 
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.
Year(s) Of Engagement Activity 2010,2011,2012,2013,2014
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
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