MRC Brain Banks: Joint application to underpin neuroscience research

Lead Research Organisation: Newcastle University
Department Name: Translational and Clinical Res Institute

Abstract

This application plans to support research into the causes and potential treatment of a range of diseases affecting the brain, some of which have been identified as priorities for research, such as dementia. The UK has a network of established Brain Banks that provide human tissue samples to a wide range of researchers. Human tissue samples have allowed a better understanding of the mechanisms operating in these complex disorders and have already aided the development of treatments for Alzheimer's disease and Parkinson's disease.

This application will support four Brain Banks in Edinburgh, London, Newcastle and Oxford. These banks each have areas of particular interest, Parkinson's disease, Alzheimer's disease and motor neurone disease. However, in addition to the collection of tissues samples from patients with brain disorders, it is also essential to collect normal tissue samples for use as controls in research. Two of the Banks have a major focus in this area, so this application will support the collection of both disease and normal tissue samples.

The banks will support scientific research by providing human tissue samples in an efficient and cost effective manner, while ensuring the samples provided are of the high quality required by researchers. The banks have worked to improve their efficiency, reducing the time required to provide the samples to researchers. Details of the samples available in each of the banks are included in a database, which is accessible through the internet. This allows researchers to see what samples are available and how to request these samples for their research in an easy way that will save time and speed up progress.

All four Brain Banks in this application have approval from an Ethics Committee to ensure that their working practices meet nationally agreed standards that apply to work with human tissue samples. The work of each Bank is overseen by a local steering committee that includes members of the public and ethics experts as well as scientists and pathologists. Brain Banking is expensive, but the operating costs of these four banks are far less than their equivalents in Europe and in the USA.

The challenges of developing treatments for complex diseases such as Alzheimer's disease and Parkinson's disease are considerable, but the Brain Banks in this application will play an important role in underpinning the scientific research in these national priority areas.

Technical Summary

This joint application from the MRC Brain Banks in Edinburgh, London, Newcastle and Oxford is submitted in accordance with the wishes of the MRC Neuroscience and Mental Health Board (NMHB). After the last funding round for the MRC Brain Banks in 2011, NMHB indicated that a future joint application would be preferred and that the applicants should demonstrate progress in efficiency and improving standards of work in accordance with an agreed set of metrics. This application fulfils this request, and aims to underpin neuroscience research in the UK by providing high-quality human brain tissue samples and data in the formats required by researchers in both academic and industrial settings. The four banks in this application together cover the collection of human tissue samples from a range of major neurological diseases, and normal tissue samples to act as controls. This provides an invaluable resource to underpin neuroscience research in UK, particularly in recently identified priority areas such as dementia.

The banks hve demonstrated in this application that they can work to the standards set in the metrics agreed with the NMHB, and have improved their efficiency of operations. The banks already support a number of major researchers in academia and industry in UK and overseas, including several who are currently funded by MRC. The provision of high quality tissue samples and accompanying data is essential for the success of these projects; the MRC brain banks constitute a critical infrastructure for this research.

In order to develop this important work further, funding for a 5 year period is requested; earlier funding awards for periods of 2 years has not been conducive to long term planning and strategy. The costs of brain banking in the UK compare very favourably with those in Europe and in the USA; over the next 5 years the banks will continue to work to improve efficiency of operation and to operate a cost recovery programme in keeping with MRC policy.

Planned Impact

The activities of the brain banks will be of major significance to neuroscience researchers in the UK and the banks plan to capitalise upon this by promoting the availability of their tissue samples during the course of this grant, primarily by the MRC database, which will give details of all samples currently available, including control samples. This promotion will not be confined to academic researchers, but also through the Association of British Pharmaceutical Industries the applicants will promote the availability of the tissue samples in their banks and will engage with both academic and industrial researchers to help provide the samples they require.

The brain banks already supply tissue samples to commercial companies for their research and development purposes and it is planned to continue and develop these contacts within an appropriate framework.

The applicants are involved in a number of local, national and international committees and bodies that relate to research. Policymakers within both government (DH) and non-governmental organisations and regulators (e.g. the Human Tissue Authority) will benefit from information arising from the use of human brain tissue samples and also from the general promotion of brain donation in neuroscience research.

The applicants have previously engaged with museums (including the Wellcome Trust museum) and charities including the Alzheimer's Society, Alzheimer's Research UK, the Multiple Sclerosis Society and Parkinson's UK to provide expert advice on brain banking. The applicants also work within the committee structure of these charities to advise on their research activities, particularly those that might involve the collection and use of human tissue samples.

The wider public is likely to benefit from this planned research, particularly if the tissue samples provided result in improved diagnosis or treatment for patients with neurodegenerative disorders. Furthermore, the promotion of brain banking and the value of brain donation for research will help raise public awareness of the challenges of dementia and neurodegenerative diseases, and help make individuals take an informed choice on this complex matter.

It is likely that the government may benefit from this research, particularly in respect to the activities of the Ministerial Action Group on Dementia Research and the Prime Minister's Challenge on dementia, within which brain banking is acknowledged as an essential requirement to support researchers in this field. The support requested in this application will be of wider benefit to these government initiatives and the research arising from this work, supported by other government funded bodies including NIHR.

Finally, MRC is likely to benefit from this research, since the applicants already provide large numbers of tissue samples to researchers such as Professor John Hardy, UCL, who are in receipt of significant funding from MRC to undertake research projects that are critically dependent on a continuous supply of high quality tissue samples that will be collected and made available during the course of this proposal.

Publications

10 25 50
 
Description Assessment of neuropathological changes associated with vascular dementia: validation of a consensus approach
Amount £7,175 (GBP)
Funding ID ARUK-NCG2013A-3 
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2013 
End 06/2015
 
Description BDR2 - Alzheimer's Brian Bank UK/Brains for Dementia Research
Amount £480,432 (GBP)
Organisation Alzheimer’s Brain Bank UK 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2013 
End 03/2018
 
Description BRU Project- Quantification of A-Synuclein Pathology in DLB and PDD
Amount £68,364 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 06/2012 
End 05/2015
 
Description Biomedical Research Centre in Ageing
Amount £16,600,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 09/2011 
End 08/2015
 
Description Biomedical Research Centre in Ageing
Amount £5,286,479 (GBP)
Organisation National Institute for Health Research 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 04/2012 
End 03/2017
 
Description Biomedical Research Unit On Lewy Body Diseases
Amount £4,500,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 09/2011 
End 08/2015
 
Description HTA
Amount £2,030,000 (GBP)
Organisation National Institute for Health Research 
Department Health Technology Assessment Programme (HTA)
Sector Public
Country United Kingdom
Start 02/2011 
End 01/2016
 
Description Intermediate Clinical Fellowship
Amount £553,000 (GBP)
Organisation Newcastle University 
Sector Academic/University
Country United Kingdom
Start 05/2010 
End 04/2015
 
Description Molecular Mechanisms Underlying Visual Hallucinations in Dementia with Lewy Bodies
Amount £178,419 (GBP)
Funding ID 181 
Organisation Alzheimer's Society 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2013 
End 11/2015
 
Description Multimorbidity in the ageing human brain - assessment by quantitive neuropathology
Amount £206,031 (GBP)
Funding ID R173/1110 
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2011 
End 03/2014
 
Description BBC Radio Newcastle and ARUK 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Speaker on BBC Radio Newcastle about ARUK/ BDR and the charity event by Matt Burke local PhD student

additional enquiries about brain donation
Year(s) Of Engagement Activity 2013
 
Description Brains for Dementia Research Ethics Study Day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Approximately 40 people attended the workshop and matters regarding both ethic an dlegela implications of brain donation were discussed

Increased understanding of legal and ethic implications in Barin Banking
Year(s) Of Engagement Activity 2013
 
Description British Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Approximately 100 memebers of the public attended the event and asked very important questions, e.g. how is success in ageing research defined?

J Attems explained the need for Brain Banking in dementia research and this lead to severeal members of teh public asking about further details as to how they could donate brains.
Year(s) Of Engagement Activity 2013
 
Description British Science Festival 2013 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Workshop Facilitator
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Two small workshops titled "How does my Brain Age?" and "Make your own Homunculus" as part of the British Science Festival 2013 aimed at all ages and informing them about how the brain works and what happens when it doesn't work. Over 200 participants came to the events as part of the festival.

None to date
Year(s) Of Engagement Activity 2013
URL http://www.britishscienceassociation.org/british-science-festival
 
Description British Science Festival Brain Awareness Week 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Dementia Research Audience of children aged 4-16, ~200 visitors undertaking interactive event

Variety of follow on enquiries about dementia research
Year(s) Of Engagement Activity 2014
 
Description Dystonia Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk to members of the Society on 16th March in Gateshead to demonstrate activities in relation to brain donation and research

Additional declarations of intent
Year(s) Of Engagement Activity 2013
 
Description Hexham ADS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact 20 Members of the Hexham branch of the Alzheimer's disease Society attended a talk on dementia research

Asked to give a talk at another branch to Society members
Year(s) Of Engagement Activity 2013
 
Description NIHR Engagement Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk and workshop with 150 members of the public to demonstrate work done and to stimulate discussion

Several members of the public contacted us to join clinical studies and to register for donation.
Year(s) Of Engagement Activity 2013
 
Description PSP Association 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk to the local PSP Association group about the work of the NBTR and about clinical trials and research.

Invited back to two further additional meetings and to give updates on research.
Year(s) Of Engagement Activity 2012
 
Description PSP Association 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk to the local PSP Association group about the work of the NBTR and about clinical trials and research.

Invited back to two further additional meetings and to give updates on research.
Year(s) Of Engagement Activity 2012
 
Description Parkinson UK North Durham Branch 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Gave talk to 30 members of the North Durham Branch of Parkinson UK on brain donation on 27th September

None so far
Year(s) Of Engagement Activity 2013
 
Description Public Awarness Day by North Durham Parkinson's UK 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Presentation and Display Stand on 20th March at Durham Town Hall in support of Awareness Eevent for Parkinson's UK

Additional declarations of intent and involvement in clinical research
Year(s) Of Engagement Activity 2013
 
Description Public Meetings 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We have hosted a series of public events speaking to local patient groups, and older peoples groups explaining the value of autopsy research and this is inevitably of interest and well received

We have had a substantial increase in sign-up for normal volunteers for autopsy donation especially since the advent of the BDR scheme and the new MRC network
Year(s) Of Engagement Activity 2012
 
Description Public Meetings 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We have hosted a series of public events speaking to local patient groups, and older peoples groups explaining the value of autopsy research and this is inevitably of interest and well received

We have had a substantial increase in sign-up for normal volunteers for autopsy donation especially since the advent of the BDR scheme and the new MRC network
Year(s) Of Engagement Activity 2009,2010,2011,2012
 
Description Public meetings 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We have given 2-3 per year meetings with older peoples groups and healthcare charites eg Age Concern, Alzheimers Society ar which we inform them about our work, invite comment and try to engage people in our studies

Requests for more events and enrollment of normal elderly controls.
Year(s) Of Engagement Activity 2012
 
Description Public meetings 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact We have hosted a series of public events speaking to local patient , society and older peoples groups explaining the value of autopsy research and this is inevitably of interest and well received

We have had a substantial increase in sign-up for normal volunteers for autopsy donation especially since the advent of the BDR scheme and the new MRC network
Year(s) Of Engagement Activity 2012
 
Description Sunderland Alzheimer's Society Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Talk on research progress and brain banking to local group on 29th April

None to date
Year(s) Of Engagement Activity 2013
 
Description TV and Radio Interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We took part in interviews and question and answer sessions on local radio and on local TV to highlight the need for autopsy donation.

Several individuals contacted us directly following the publicity and expressed an interest in receiving further information about tissue donation.
Year(s) Of Engagement Activity 2009,2010,2011,2012
 
Description TV and Radio Interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We took part in interviews and question and answer sessions on local radio and on local TV to highlight the need for autopsy donation.

Several individuals contacted us directly following the publicity and expressed an interest in receiving further information about tissue donation.
Year(s) Of Engagement Activity 2012
 
Description Televison and Radio Interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We took part in interviews and question and answer sessions on local radio and on local TV to highlight the need for autopsy donation.

Several individuals contacted us directly following the publicity and expressed an interest in receiving further information about tissue donation.
Year(s) Of Engagement Activity 2012
 
Description Televison and Radio Interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact We took part in interviews and question and answer sessions on local radio and on local TV to highlight the need for autopsy donation.

Several individuals contacted us directly following the publicity and expressed an interest in receiving further information about tissue donation.
Year(s) Of Engagement Activity 2008,2009,2012
 
Description The Newcastle Brain Tissue Resource - A Biobank for the Study of Human Neurological and Psychiatric Disorders 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Approximately 50 delegates of the SONA 2013 Conference, Morocco, attended the presentation given by Mrs Keers. Mrs Keers described the Newcatle Brain Tissue Resource (NBTR) and answered questions in the discussion e.g., how can researchers ask for brain tissue from the NBTR

Increased international awareness of the availability of well chracterised human brain tissue for research.
Year(s) Of Engagement Activity 2013
 
Description U3A Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Approximately 50 members of the public attended a talk on the work of the NBTR. There was a lively and interested discussion afterwards about clinical trials and brain tissue donation for research.

Have been invited to give another talk next year and also several inquiries about volunteering have been made
Year(s) Of Engagement Activity 2012
 
Description U3A Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Approximately 50 members of the public attended a talk on the work of the NBTR. There was a lively and interested discussion afterwards about clinical trials and brain tissue donation for research.

Have been invited to give another talk next year and also several inquiries about volunteering have been made
Year(s) Of Engagement Activity 2012