UKCRC Brain Bank Strategy: Renewal of Newcastle Brain Tissue Resource

Lead Research Organisation: Newcastle University
Department Name: Institute for Ageing and Health

Abstract

Neurological disorders such as Alzheimer?s disease and dementia with Lewy bodies affect large numbers of individuals in the UK and represent some of the major health burdens in developed countries. For example Alzheimer?s affects over 400,000 people in the UK and the numbers of people with the disorder are expected to rise substantially in coming years. Whilst considerable advances have been made in our understanding of disorders that affect brain function, we still need to identify the underlying causes so that we can find new treatments. Collection of brain tissue from donors at death represents one of the very few ways that we can investigate the biochemistry and pathology of neurodegenerative disorders. It is not generally possible to take brain tissue from live donors and animal models can only mimic certain aspects of the human disorder. Post mortem tissue research is therefore our best avenue to understanding these conditions. By studying such tissue samples it is possible to identify the changes that give rise to conditions such as Alzheimer?s disease, Parkinson?s disease, depression and motor neurone disease. This project aims to collect brain tissue from donors from a wide range of neurological and psychiatric disorders, focussing on dementia and neurodegenerative disease, for distribution to both the national and international research community through a wide network, managed in collaboration with the UK Medical Research Council. This will ensure that as many research projects as possible can be undertaken on the samples, thereby increasing the opportunities for identifying treatments for these disorders. All donors will have been seen in a recognised specialist clinic and will have agreed to donate tissue before their death, having been informed of all procedures. Next of kin and other involved parties will be included in these discussions. The project has already received formal Ethical Approval and we have been making this type of request to patients and their families for many years without experiencing any adverse reactions. Indeed most people find this a welcome opportunity to contribute to an important research effort. Our long term aim is to contribute as widely as possible to the national programme of brain research into neurological and psychiatric disorders and advance our understanding of the causes of these disorders, with the long term aim of identifying treatments.

Technical Summary

The Newcastle Brain Tissue Resource (NBTR) represents a major UK and international collection of well characterised human brain from patients with various forms of dementia, particularly Alzheimer?s disease (AD) and dementia with Lewy bodies (DLB). A major strength of the NBTR is the prospective nature of the collection, from clinically well characterised individuals assessed using internationally recognised protocols that have in the case of DLB, originated in Newcastle. We contribute to the MRC National UK Brain Banking Strategy by extending the current prospective collection of AD and DLB cases along with prospectively assessed cases of PD who may or may not develop dementia, and post stroke/vascular cognitive impairment. We will additionally undertake prospective collection of rarer neurological disorders such as motor neurone disease, frontotemporal lobe dementia, along with suitable comparison tissue. Following standardised diagnostic neuropathology, tissues will be made available to the wider community via the Brains for Dementia Research, and MRC network for scientific study.

Publications


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Akinyemi RO (2016) Neurogenomics in Africa: Perspectives, progress, possibilities and priorities. in Journal of the neurological sciences

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Akinyemi RO (2016) Neurogenomics in Africa: Perspectives, progress, possibilities and priorities. in Journal of the neurological sciences



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Al-Mashhadi S (2015) Oxidative Glial Cell Damage Associated with White Matter Lesions in the Aging Human Brain. in Brain pathology (Zurich, Switzerland)




 
Guideline Title DLB Consensus Criteria
Description DLB Consensus criteria revised 2005
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
 
Description DLB Consensus criteria revised 2005
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical reviews
 
Description Ministerial Dementia Research Strategy
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
 
Guideline Title NICE Dementia Guideline
Description NICE Dementia Guideline
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
URL http://www.nice.org.uk/CG42
 
Description ARUK Network Centre extension
Amount £35,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 09/2016 
End 08/2017
 
Description ARUK Project Grant
Amount £7,175 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2013 
End 03/2014
 
Description Age Related Changes in the Basement Membranes of Cerebral Blood Vessels
Amount £18,996 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 10/2011 
End 09/2013
 
Description Alzheimer's Research UK PhD Studentship
Amount £90,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 10/2009 
End 09/2012
 
Description Alzheimer's Society Project Grant
Amount £178,422 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 06/2013 
End 12/2016
 
Description Assessment of neuropathological changes associated with vascular dementia: validation of a consensus approach
Amount £7,175 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 07/2013 
End 06/2015
 
Description BDR Blood collection
Amount £18,460 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2013 
End 03/2018
 
Description BDR2 - Alzheimer's Brian Bank UK/Brains for Dementia Research
Amount £480,432 (GBP)
Organisation Alzheimer’s Brain Bank UK (ABBUK) 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2013 
End 03/2018
 
Description BRC - Assessment of Multimorbidity in the Brains of Demented Elderly Patients
Amount £36,000 (GBP)
Organisation Newcastle upon Tyne Hospitals NHS Foundation Trust 
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2010 
End 12/2011
 
Description BRC - MRes Studentship
Amount £10,500 (GBP)
Organisation University College London Hospitals Charity (UCLH) 
Department National Institute for Health Research (NIHR)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 09/2013 
End 09/2014
 
Description BRC - Neurodegenerative cortical pathology
Amount £10,500 (GBP)
Organisation University College London Hospitals Charity (UCLH) 
Department National Institute for Health Research (NIHR)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 09/2013 
End 09/2014
 
Description BRU Project Grant
Amount £41,211 (GBP)
Organisation University College London Hospitals Charity (UCLH) 
Department National Institute for Health Research (NIHR)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2013 
End 12/2013
 
Description BRU Project- Quantification of A-Synuclein Pathology in DLB and PDD
Amount £68,364 (GBP)
Organisation University College London Hospitals Charity (UCLH) 
Department National Institute for Health Research (NIHR)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 06/2012 
End 05/2015
 
Description BRU Studentship
Amount £68,365 (GBP)
Organisation University College London Hospitals Charity (UCLH) 
Department National Institute for Health Research (NIHR)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 06/2012 
End 05/2015
 
Description Biomedical Research Centre in Ageing
Amount £5,286,479 (GBP)
Organisation Newcastle upon Tyne Hospitals NHS Foundation Trust 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2012 
End 03/2017
 
Description Biomedical Research Centre in Ageing
Amount £16,600,000 (GBP)
Organisation Newcastle upon Tyne Hospitals NHS Foundation Trust 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 09/2011 
End 08/2015
 
Description Biomedical Research Unit On Lewy Body Diseases
Amount £4,500,000 (GBP)
Organisation Newcastle upon Tyne Hospitals NHS Foundation Trust 
Department NIHR Newcastle Biomedical Research Centre
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 09/2011 
End 08/2015
 
Description Brains for Dementia Research
Amount £480,432 (GBP)
Organisation Alzheimer’s Brain Bank UK (ABBUK) 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2013 
End 04/2018
 
Description Cognitive and Behavioural Disturbance in LBD
Amount £50,637 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 12/2010 
End 05/2013
 
Description Does Mitochondrial Telomerase Protect the Brain Against Ageing and Age-Related Neurodegenerative Diseases?
Amount £76,585 (GBP)
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2012 
End 11/2013
 
Description HPA Studentship
Amount £105,000 (GBP)
Organisation Public Health England (formerly: Health Protection Agency) 
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 10/2009 
End 09/2012
 
Description HTA
Amount £2,030,000 (GBP)
Organisation National Institute for Health Research (NIHR) 
Department Health Technology Assessment Programme (HTA)
Sector Public
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 02/2011 
End 01/2016
 
Description Intermediate Clinical Fellowship
Amount £553,000 (GBP)
Organisation Newcastle University 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 05/2010 
End 04/2015
 
Description MRC Centre Award
Amount £1,325,661 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 02/2013 
End 01/2018
 
Description Molecular Mechanisms Underlying Visual Hallucinations in Dementia with Lewy Bodies
Amount £178,419 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 06/2013 
End 11/2015
 
Description Multimorbidity in the ageing human brain - assessment by quantitive neuropathology
Amount £206,031 (GBP)
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 04/2011 
End 03/2014
 
Description Project Grant
Amount £238,648 (GBP)
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 07/2013 
End 06/2016
 
Description Pyroglutamylated amyloid beta in Alzheimer's and Lewy body disease
Amount £259,909 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2017 
End 12/2019
 
Description Research Grant The utility of mitochondrial Complex IV analysis as a biomarker of carbon monoxide exposure
Amount £34,147 (GBP)
Organisation Gas Safety Trust 
Sector Charity/Non Profit
Country Unknown
Start 07/2016 
End 02/2017
 
Description Research Project Grant
Amount £74,584 (GBP)
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 01/2012 
End 06/2013
 
Description Small Equipment Grant
Amount £4,934 (GBP)
Organisation British Neuropathological Society 
Sector Learned Society
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 11/2016 
End 10/2017
 
Description Strategic Grant
Amount £3,700,639 (GBP)
Organisation The Wellcome Trust Ltd 
Sector Charity/Non Profit
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 12/2011 
End 11/2016
 
Description Target Advancement Program Investigation of lipid metabolism in GBA associated parkinsonism
Amount $100,000 (USD)
Organisation Michael J Fox Foundation 
Sector Charity/Non Profit
Country United States of America
Start 11/2016 
End 11/2017
 
Description UKCRC Brain Bank Strategy: Renewal of Newcastle Brain Tissue Resourse
Amount £352,528 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom of Great Britain & Northern Ireland (UK)
Start 11/2009 
End 11/2011
 
Title Lewy Body Tissue Resource 
Description Post mortem brain tissue collected prospectively from a cohort of well characterised and assessed cases 
Type Of Material Biological samples 
Year Produced 2006 
Provided To Others? Yes  
Impact Multiple publications. Development and licensing of an in-vivo brain imaging system (DaT SPECT) for differential diagnosis of dementia 
 
Title New models of genesis of visual hallucinations 
Description A new perception / attention deficit (PAD) model of genesis of visual hallucinations in neurodegenerative disease has been developed based on our data and is currently under clinical evaluation. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2006 
Provided To Others? Yes  
Impact Demonstration of the cholinergic basis of VH in neurodegenerative disease led us to the first RCT showing the benefits of cholinesterase inhibitors as a symptom specific therapy 
 
Title New models of genesis of visual hallucinations. 
Description A new perception / attention deficit (PAD) model of genesis of visual hallucinations in neurodegenerative disease has been developed based on our data and is currently under clinical evaluation. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2006 
Provided To Others? Yes  
Impact Demonstration of the cholinergic basis of VH in neurodegenerative disease led us to the first RCT showing the benefits of cholinesterase inhibitors as a symptom specific therapy 
 
Title Newcastle Brain Tissue Resource Database 
Description Fixed and frozen brain tissue from well clinically characterised cases with neurodegenerative diseases (Alzheimer's, Parkinson's, vascular, Lewy body, mitochondrial) and aged controls. 
Type Of Material Biological samples 
Year Produced 2009 
Provided To Others? Yes  
Impact Multiple publications. See details of external collaborations for other examples. 
 
Title Newcastle Brain Tissue Resource Database 
Description Fixed and frozen brain tissue from well clinically characterised cases with neurodegenerative diseases (Alzheimers, Pakinsons, vascular, Lewy body, mitochondrial) and aged controls. 
Type Of Material Biological samples 
Year Produced 2006 
Provided To Others? Yes  
Impact Multiple publications. Development and licensing of an in-vivo brain imaging system (DaT SPECT) for differential diagnosis of dementia. See details of external collaborations for other examples. 
 
Title North East Visual Hallucinations Inventory (NEVHI) 
Description A new clinical schedule for assessment of visual hallucinations to be used in patients with either cognitive impairment, visual impairment or both. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2008 
Provided To Others? Yes  
Impact The schedule has been published PMID 18181237 
URL http://europepmc.org/abstract/MED/18181237
 
Description GE Healthcare Biomarkers 
Organisation GE Healthcare
Department Global Research Centre, Biosciences
Country United States of America 
Sector Private 
PI Contribution A listing of potential neuroimaging targets or the diagnosis of depression identified by whole genome expression profiling of selected brain regions in individuals with late onset depression.
Collaborator Contribution A listing of potential neuroimaging targets or the diagnosis of depression identified by whole genome expression profiling of selected brain regions in individuals with late onset depression.
Impact Patents granted. PCT/EP2009/055944 GABA Biomarkers for depression. PCT/EP2009/055945 Gluatmine Biomarkers for depression. Manuscripts in preparation No major outcomes yet.
 
Description GE Healthcare Biomarkers 
Organisation GE Healthcare
Department Global Research Centre, Biosciences
Country United States of America 
Sector Private 
PI Contribution A listing of potential neuroimaging targets for the diagnosis of depression identified by proteomic and whole genome expression profiling of selected brain regions in individuals with treatment resistant late onset depression.
Collaborator Contribution A listing of potential neuroimaging targets for the diagnosis of depression identified by proteomic and whole genome expression profiling of selected brain regions in individuals with treatment resistant late onset depression.
Impact Patents granted. PCT/EP2009/055944 GABA Biomarkers For Depression PCT/EP2009/055945 Glutamine Biomarkers For Depression Manuscripts in preparation, further multidisciiplinary collaborative work in same area being planned involving molecular biology and electrophysiology. No major outcomes yet.
 
Description MRC Brain Banks Network 
Organisation King's College Hospital
Department King's College Hospital Charity
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Charity/Non Profit 
PI Contribution Exchange of best practice and harmonisation of protocols
Collaborator Contribution Exchange of best practice and harmonisation of protocols
Impact Exchange of best practice and harmonisation of protocols
Start Year 2010
 
Description MRC Brain Banks Network 
Organisation University of Edinburgh
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution Exchange of best practice and harmonisation of protocols
Collaborator Contribution Exchange of best practice and harmonisation of protocols
Impact Exchange of best practice and harmonisation of protocols
Start Year 2010
 
Description MRC Brain Banks Network 
Organisation University of Oxford
Country United Kingdom of Great Britain & Northern Ireland (UK) 
Sector Academic/University 
PI Contribution Exchange of best practice and harmonisation of protocols
Collaborator Contribution Exchange of best practice and harmonisation of protocols
Impact Exchange of best practice and harmonisation of protocols
Start Year 2010
 
Description Alzheimer's Research UK Talk in Harrogate 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk at Harrogate Holiday Inn, organised by Andrew Jones MP for Harrogate and Knaresborough, with question and answer session

Further requests for information about participation in research
Year(s) Of Engagement Activity 2014
 
Description Annfield Plain Methodist Church North Durham 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk and Q&A session to support group

Further enquiries and requests for information
Year(s) Of Engagement Activity 2014
 
Description BBC RAdio Newcastle 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact BBC Radio Newcastle Alfie Joey and Charlie Charlton Show about brain banking and dementia

Enquiries about research participation
Year(s) Of Engagement Activity 2014
 
Description BBC Radio Newcastle Alfie Joey and Anna Foster Show 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Interview on BBC Radio Newcastle on the 22nd February by Alfie Joey of the Alfie Joey and Anna Foster Show about brain banking with a tour of facilities. Increased interest in brain donation followed from the broadcast.
Year(s) Of Engagement Activity 2017
URL http://www.bbc.co.uk/programmes/p044w33l
 
Description BBC Radio Newcastle Kirsten O'Brien Show 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Conversation o BBC Radio Newcastle on the 17th February on the Kirsten O'Brien Show about recent media reports on shortages of brain donations for research. Increase in numbers of enquiries after show about brain donation.
Year(s) Of Engagement Activity 2017
URL http://www.bbc.co.uk/programmes/p046ww0m
 
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 Bang Goes the Theory - Ageing BBC1 National TV 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Appearance on national TV program with estimated viewing figures of 2.5 million discussing brain ageing and dementia

various enquiries from members of the public about brain donation
Year(s) Of Engagement Activity 2014
 
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 British Science Festival Brain Awareness Week 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Interactive display and talks on 21st March as part of British Science Festival Brain Awareness Week 2015 at Great North Museum, Newcastle
Year(s) Of Engagement Activity 2015
 
Description Centre Launch Event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Alzheimer's Society Doctoral Training Centre Launch on 24th September at The Core, Newcastle to about 60 people. Considerable number of questions from the audience about research and requests for additional information.
Year(s) Of Engagement Activity 2015
 
Description Dementia Awareness Talk 
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 28th January meeting at Central Square Newcastle to give talk to Alzheimer's Society members and staff
Year(s) Of Engagement Activity 2015
 
Description Dementia Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Platform Talk at International Dementia with Lewy Bodies Conference 2015, Fort Lauderdale Florida USA to approx. 400 participants from a variety of sectors. Considerable interest from floor about potential of research.
Year(s) Of Engagement Activity 2015
URL https://ce.mayo.edu/node/3844
 
Description Dementia Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Talk on dementia and local research activity on 29th September to Dementia Action Sunderland members at "The Place" Athenaeum Street, Sunderland. Thirty people attended including local mayor and councillors who asked considerable number of questions.
Year(s) Of Engagement Activity 2015
 
Description Durham and District Rotary Club 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Brief talk to Rotary Club about dementia research and question and answer session

Asked to give further talks at other Rotary Clubs
Year(s) Of Engagement Activity 2014
 
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 Hexham Beacon Group, Hexham Methodist Church 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk on dementia to a business members group and Rotarians to discuss recent advances in research and treatment
Year(s) Of Engagement Activity 2016
 
Description Joseph Cowan Lifelong Learning 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Talk on visual hallucinations to third age study group
Year(s) Of Engagement Activity 2016
 
Description Lay Visit 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Visit to NBTR by Lay Members of Biobank on 26th February
Year(s) Of Engagement Activity 2015
 
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 Newspaper Article 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Newspaper article (Newcastle Chronicle) on tissue donation for research. Lots of telephone calls and enquiries about donation.
Year(s) Of Engagement Activity 2015
URL http://www.chroniclelive.co.uk/news/north-east-news/more-2000-people-signed-bodies-10017217
 
Description OK to Ask" event at Freeman Road Hospital 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Talk on tissue banking to members of the public, patient groups and professionals who were interested in how tissue is looked after and used
Year(s) Of Engagement Activity 2016
 
Description PSP Association 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Q&A with small patient support group

Group asked for visit to labs
Year(s) Of Engagement Activity 2014
 
Description PSP Association 
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 Hosting of meeting for Northumberland and Newacstle PSP Association on 5th February for members and general public
Year(s) Of Engagement Activity 2015
 
Description PSP Association 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact Small support group with Q&A session

Asked for further information
Year(s) Of Engagement Activity 2014
 
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 Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Organising of meeting for regional group on 25th June of the Northumberland PSP Association for 12 people. requests for further information and another similar event.
Year(s) Of Engagement Activity 2015
 
Description PSP Association Meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact A talk to the PSP Association Meeting CAV 16th February about clinical aspects of PSP and CBS with talk afterwards on joining trials.
Year(s) Of Engagement Activity 2017
 
Description PSP Association Meeting CAV 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Members of local progressive supranuclear palsy and corticobasal syndrome support group came to have a talk on support for the condition and tissue donation
Year(s) Of Engagement Activity 2016
 
Description Parkinson UK Great North Museum 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Event organised at the Great North Museum by Parkinson's UK to showcase local research and support networks within region
Year(s) Of Engagement Activity 2016
 
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 Parkinson's UK North Durham Branch 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Fifty members of the North Durham Branch of Parkinson's UK had their annual general meeting where delivered a talk on visual hallucination in Parkinson's and Lewy body disease and members asked question on symptoms and causes. Lots of questions on how to join in clinical studies.
Year(s) Of Engagement Activity 2017
 
Description Presentation to Alzheimer's Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Supporters
Results and Impact Talk on 27th March as part of Alzheimer's Society Branch opening in Ashington to 30 people. Lots of interest from members of the public and audience members on work of Society
Year(s) Of Engagement Activity 2015
 
Description Presentation to Society Sponsors 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Supporters
Results and Impact Presentation at Alzheimer's Society Legacy event at Alnwick Castle on 26th March to inform on research being undertaken by Society to an audience of 20 people. Considerable interest in work of Society and in local research with several questions from audience
Year(s) Of Engagement Activity 2015
 
Description Probus Meeting on Dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk to local retired business group on dementia treatments and causes and on how tissue donations have been used to make advances in treatment with discussion afterwards on how to join clinical research studies
Year(s) Of Engagement Activity 2017
 
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 Meeting (ARUK) 
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 Alzheimer's Research UK Public Meeting on the 9th of September at Great North Museum Newcastle to approximately 80 people. Several presentations and considerable numbers of questions from the audience.
Year(s) Of Engagement Activity 2015
 
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 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 Radio Newcastle 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Five day event with short 5 minute broadcasts covering brain banking and how tissue is used and also how tissue is donated
Year(s) Of Engagement Activity 2016
 
Description Rotary Club Event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Talk on 29th April to Durham and District Rotary Club at the Chester le Street Cricket Club to 12 members. Considerable debate and questions afterwards and Club decided to make dementia research their target event for the year.
Year(s) Of Engagement Activity 2015
 
Description Society Visit 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Talk on 1st June to Durham Probus society (retired and semi-retired business people) at Durham Community Centre to 30 people. Lots of questions and requests for additional information.
Year(s) Of Engagement Activity 2015
 
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 2012
 
Description Talk to Church Group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk on dementia given on 24th January to parishioners of Murton Methodist Church
Year(s) Of Engagement Activity 2015
 
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 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 Tour of Research Facilities 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Supporters
Results and Impact Visit on 25th March by Alzheimer's Society Lay members and staff to NBTR and Campus to have discussion and tour of facilities by 6 people. Asked by Society to plan another tour for 2016.
Year(s) Of Engagement Activity 2015
 
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
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Talk on Dementia Research on 1st September to approximately 40 members of the Tynedale U3A. Lively debate and questions after the talk and an invitation to give further talks and send information to members.
Year(s) Of Engagement Activity 2015
 
Description • ARUK public meeting Lindisfarne Room Newcastle University 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Panel discussion on use of tissue in research and the donation process and new discoveries in Alzheimer's disease
Year(s) Of Engagement Activity 2016
 
Description • Alzheimer's Society Research Talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact 20 people attended an open day to hear about research in dementia

Participants asked for further information on brain donation
Year(s) Of Engagement Activity 2014
 
Description • Palliative Care Education Afternoon 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Approxiamtley 50 attendees interested in research during and after terminal palliative care
Year(s) Of Engagement Activity 2016