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

10 25 50
 
Description Project grant G1100578
Amount £352,784 (GBP)
Funding ID G1100578 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 10/2011 
End 10/2015
 
Title BRAIN UK Database 
Description The construction of a linked anonymised electronic database containing details of the archival tissue holdings of UK neuropathology centres and associated protocols to form a virtual brain bank. 
Type Of Material Biological samples 
Year Produced 2010 
Provided To Others? Yes  
Impact It is intended to make the BRAIN UK database available to the research community via a website in an anonymised format once it is completed. This will enable researchers to identify if tissue is available for their investigations in workable quantities around the UK. Until this platform is formalised BRAIN UK accepts informal enquiries relating to tissue availability in order to advise upon applications for researcher access. 
 
Description MRC UK Brain Banks Network 
Organisation Medical Research Council (MRC)
Department MRC UK Brain Banks Network
Country United Kingdom 
Sector Public 
PI Contribution We are fortunate to be included within the UK Brain Banks Network and hope that our participation will be important in terms of improving operational efficiency in terms of facilitating high-quality research. The neuropathology centres participating within BRAIN UK 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) that are currently not catered for by existing brain banking facilities. Of particular importance, there exists a large quantity of 'normal' brain tissue throughout the UK which may be of immense use as suitable control material.
Collaborator Contribution In 2012 BRAIN UK contributed data relating to 35,000 available research cases to the centralised UK Brain Banks Network database.
Impact The MRC UK Brain Banks Network is still in its infancy but it is hoped that outputs or impacts of our collaboration will become aparent in the future.
Start Year 2009
 
Description UK NHS Neuropathology departments 
Organisation Addenbrooke's Hospital
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Cardiff and Vale University Health Board
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Derriford Hospital
Department Histopathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Great Ormond Street Hospital (GOSH)
Department Department of Histopathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Imperial College Healthcare NHS Trust
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation King's College Hospital NHS Foundation Trust (NCH)
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation NHS Greater Glasgow and Clyde (NHSGGC)
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation NHS Lothian
Department Department of 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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation North Bristol NHS Trust
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Nottingham University Hospitals NHS Trust
Department Department of 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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Oxford University Hospitals NHS Foundation Trust
Department Department of Neuropathology and Ocular 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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Royal Free London NHS Foundation Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Formation of BRAIN UK
Collaborator Contribution Collaboration to provide data about archives and to satisfy requests for tissue.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Salford Royal 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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation Sheffield Teaching Hospitals NHS Foundation Trust
Department Academic Unit of 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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation University College London
Department Division of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation University Hospital Southampton NHS Foundation Trust
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation University Hospitals Birmingham NHS Foundation Trust
Department Department of Neuropathology
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description UK NHS Neuropathology departments 
Organisation West London Mental Health NHS Trust
Department Corsellis Collection
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.
Impact Formation of BRAIN UK database. Provision of brain tissue for research.
Start Year 2008
 
Description Advertisement via Association of British Neuropathologists (ABN) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Health professionals
Results and Impact Dissemination of BRAIN UK advertisement in January 2012 to ABN membership via e-mail.

Informal enquiries regarding the availability of tissue for research purposes and formally submitted applications.
Year(s) Of Engagement Activity 2012
 
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 Linkage to British Neuroscience Association (BNA) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Health professionals
Results and Impact URL link established from ABN website (http://www.bna.org.uk/about/related-links.html) to BRAIN UK and dissemination of information in ABN e-Newsletter January 2012.

Informal enquiries to BRAIN UK concerning availability of tissue for research purposes.
Year(s) Of Engagement Activity 2012
 
Description Linkage to European Confederation of Neuropathological Societies (EuroCNS) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Dissemination of information in e-Bulletin and print version of journal 'Clinical Neuropathology'.

Informal enquiries to BRAIN UK concerning availability of tissue for research purposes.
Year(s) Of Engagement Activity 2012
 
Description Presentation to South of England Brain Tumour Alliance (SEBTA) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact Powerpoint presentation given at South of England Brain Tumour Alliance meeting October 2012 concentrating on the availability of brain tumour tissue through BRAIN UK.

Interest regarding the availability of paediatric tumour tissue.
Year(s) Of Engagement Activity 2012
 
Description 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 Health professionals
Results and Impact Brief update delivered to the British Neuropathological Society Professional Affairs Committee as part of their annual meeting.

Encouraged participation in BRAIN UK
Year(s) Of Engagement Activity 2010,2011,2012,2013,2014
 
Description Update Report 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
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