MICA: Dementias Platform UK 2 - Integrated Dementia Experimental Medicine

Lead Research Organisation: University of Oxford
Department Name: Psychiatry

Abstract

DPUK is a public-private partnership to accelerate the development of new treatments for dementia. Since inception (2014) DPUK has increased the UK capacity for dementia research through infrastructure development and strategic data collection, leveraging a further £74.4m for dementia research.

The second phase of DPUK (DPUK2) focuses on developing UK capacity for dementia experimental medicine. A major challenge in developing new treatments is understanding the mechanisms through which a drug might operate. This involves precision studies where individuals of known vulnerability to specific causes of dementia are recruited to studies of cause-specific mechanistic pathways. These studies are very difficult to do as they require detailed assessment of volunteers before the study begins and standardising all the procedures in centres across the UK. These studies are also high risk in that there is no guarantee of success.

DPUK2 addresses these issues head-on at two levels. First it uses the UK's rich legacy in population cohort studies to identify suitable volunteers by using and enhancing existing cohort data. Second it creates a pre-competitive environment that brings together industry, academic and third-sector entities into partnership. This not only shares the costs and risks of experimental medicine (EM) studies, it also shares the benefits amongst a wider spread of stakeholders, each able to exploit the findings. DPUK2 does this through 3 inter-dependent work-streams.

1. The Data Portal (DP): The DP is a world leading end-to-end dementia focused data management solution. It enables large and complex datasets to be accessed remotely from around the globe without compromising data security. The DP is being developed in partnership with Health Data Research UK (HDR UK) so that we can maximise the data available to dementia research. The DP is used to manage all the data and information systems necessary for conducting precision studies. It brings large and complex datasets together in order to test new ideas; it manages personal information securely to enable recruitment to precision studies; it manages many types of data so that genetics, brain imaging, cognitive performance; and questionnaire data can all be analysed together.

2. The Trials Delivery Framework (TDF): The TDF is the vehicle that enables the DPUK2 experimental medicine programme to be efficient. The TDF organises our Clinical Studies Register (CSR) through which cohort members can volunteer for experimental medicine studies. The CSR allows us to contact members to enrich their data in terms of background information, cognitive testing, and where necessary genetics. As part of the CSR, and in partnership with the Alzheimer's Society, we have a PPI programme to understand what best practice is in terms if recruitment to experimental medicine studies. The TDF also enables us to identify centres of excellence across the UK for conducting experimental studies rigorously. This not only assures data quality, but also means that volunteers do not have to travel too far to participate.

3. The EM Incubator: The incubator is where our partners meet to plan and execute the experimental medicine programme. It has three themes; the first is Vascular Health. This is important because so many factors that affect the heart also affect the brain. If any area is likely to have drugs that already exist and could be re-purposed for dementia, this is it.The second theme is Synaptic Health. Here we investigate factors that affect the loss of neuron synapses. This is important because unlike neurons, synapses (the connections between neurons), can be generated, which is critical to learning and maintaining memory. The third area is Neuroimmunology. This is important as inflammation is a systemic problem that is known to affect the brain and might have systemic solutions, and so represents a promising area for new treatments.

Technical Summary

The objectives of the Dementias Platform UK renewal (DPUK2) are to:
1. Increase the precision of experimental medicine (EM) through precision phenotyping according to genetic risk
2. Increase the capacity of EM through streamlined systems and integrated informatics
3. Increase the opportunity for EM through agile and adaptive global partnerships

These will be achieved through three inter-dependent workstreams comprising:

1. Workstream A The Data Portal: The Data Portal will be enhanced to provide secure and auditable data management with an on-premise cloud, and hybrid solutions for :
- Observational and EM multi-modal data discovery
- In silico experiments including multi-modal and machine learning analysis
- Enriched phenotyping for the Clinical Studies Register
- Knowledge development and preservation

2. Workstream B The Trials Delivery Framework (TDF): The TDF will provide a recruitment and study delivery mechanisms for dementia experimental medicine:
- Pre-clinical recruitment via the Clinical Studies Register
- Early disease recruitment via existing NIHR and NHS investments (Join Dementia Research, BRCs, memory clinics)
- Trial delivery centre network drawn from existing structures including the DPUK imaging network, EPAD and NIHR TRC-D and BRCs.

3. Workstream C The EM Incubator: The EM incubator nurtures academic-industry partnerships for precision mechanistic EM studies, demonstrating the value of this approach through a series of pump-prime funded experiments on:
WP 5- Vascular Health
WP 6- Synaptic Health
WP 7- Neuroimmunology

DPUK2 aims to develop its EM portfolio according to scientific interest and further funding.

Planned Impact

The main aim of DPUK2 is to use precision experimental medicine (EM) to reduce the mechanistic uncertainty surrounding the discovery of new treatments for dementia. To achieve this we will bring together the essential stages of EM workstreams - vascular, synaptic health and neuroinflammation. With a clear focus on identifying appropriate biomarkers for treatment stratification, there will be many beneficiaries, including dementia patients, their families and the wider population upon which much of the economic burden falls. We outline the immediate areas of academic and non-academic impact for DPUK2:

Academic sector
The Data Portal is a key development in the open science agenda, offering increased opportunity and economies of scale and efficiency. Scientists around the world can access an exceptional breadth of data for rapid data discovery and hypothesis testing. Additionally the implementation of a single common data model across datasets offers researchers unprecedented resource savings in data preparation, and enhanced access for cross-cohort data analysis.

The trials delivery framework addresses the fragmented nature of dementia-related trials in the UK. By providing precision risk stratification and targeted recruitment to multi-centre studies, using a network of clinical research centres, the UK becomes more attractive for conducting rigorous, relevant, cutting-edge science. The EM Incubator offers an agile pre-competitive model for developing partnerships with industry. Benefits to academics include access to developing technologies and commercially strategic research questions.

Commercial and private sector
Precision EM, leading to the de-risking of trials, is of profound interest to molecular, cellular and systems neuroscientists working in industry to identify disease mechanisms and drug targets. DPUK2 will develop its existing profile of industry engagement and collaboration, and has appointed a lead (Declan Jones) for industry. Our strategy is based around active interaction and collaborative funding of proof of concept studies leading to larger programmes of work. Such direct engagement is necessary for meaningful translation of basic research findings. Our list of partners demonstrates the interest of industry in this model.

Public sector, policy and practice
We will continue working with other agencies in spearheading contemporary debate about neurodegenerative disease and dementia. We have appointed a lead (Carol Routledge) for the charity and philanthropy sector who has in-depth contact with UK dementia policy makers, and our partnerships include ARUK and the Alzheimer's Society (the two main UK dementia research charities). More widely we contribute to the NIHR Dementia Progress Group, setting the Dementia 2025 priorities, and to UKRI cohort data management policy discussions - the Data Portal being a key demonstration of the challenges and benefits of policy development in this area.

Public engagement
Engagement and consultation with the public, patients and carers is central to our mission. This shapes how we communicate our research findings and also how we address such issues as stigma, research relevance and the research culture within the NHS in relation to dementia. We are committed to this because neurodegeneration should be regarded as increasingly tractable to research in genetics, neuroscience, and epidemiology, and that EM is key to future progress. We will therefore promote dementia research focusing on the understanding of pathogenesis and pathophysiology, and developing new approaches to treatment.

Skills and training
We will continue to recruit and train staff and students from a wide variety of backgrounds in inter-disciplinary skills that will be widely relevant outside academia. Moreover, through our multi-disciplinary approach we will be training a new cadre of early career researchers who will be attracted to, and equipped for, careers in dementia research

Publications

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Anad A (2022) Vasculocentric Axonal NfH in Small Vessel Disease in Journal of Neuropathology & Experimental Neurology

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Cope TE (2022) Causal Evidence for the Multiple Demand Network in Change Detection: Auditory Mismatch Magnetoencephalography across Focal Neurodegenerative Diseases. in The Journal of neuroscience : the official journal of the Society for Neuroscience

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Escott-Price V (2021) Probability of Alzheimer's disease based on common and rare genetic variants. in Alzheimer's research & therapy

 
Description Contribution to UK Government's Neurodegeneration Initiative discussions - December 2021 and January 2022
Geographic Reach National 
Policy Influence Type Participation in a national consultation
URL https://www.gov.uk/government/news/government-to-invest-375-million-in-neurodegenerative-disease-res...
 
Description Dr M Malpetti - Invited contribution to the World Alzheimer Report 2021
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact Publication to serve as reference for students and practitioners.
URL https://www.alzint.org/u/World-Alzheimer-Report-2021.pdf
 
Description Expert Advisor on Trond Mohn Foundation 2021
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
Impact The foundation continues to offer research grants to promising researchers from Norwegian universities and university hospitals.
 
Description Invited abstract reviewing board member at Tau2022 conference - Dr M Malpetti
Geographic Reach Europe 
Policy Influence Type Membership of a guideline committee
Impact Served as subject specific reviewer.
 
Description Invited abstract reviewing board member at the European Molecular Imaging Meeting - Dr M Malpetti
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
Impact Served as subject specific reviewer.
 
Description Invited co-authorship for a systematic review - Dr M Malpetti
Geographic Reach Multiple continents/international 
Policy Influence Type Contribution to new or Improved professional practice
Impact Publication in a major journal.
 
Description Invited contribution to hot-topic series for the Journal of Nuclear Medicine - Dr M Malpetti
Geographic Reach Multiple continents/international 
Policy Influence Type Contribution to new or Improved professional practice
 
Description Invited to review Clinical Trials Regulation by Medicines and Healthcare products Regulatory Agency (MHRA)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact This policy review has been launched following the United Kingdom's departure from the European Union. It aims to design a world-class sovereign regulatory environment for clinical trials that will support the development of innovative medicines and ensure that the UK retains and grows its reputation as world leading base for life sciences, generating opportunities for skilled jobs in the UK.
 
Description Participation in an advisory committee - Alzheimer Research UK Scientific Advisory Board Chair (2021)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact ARUK is a major funder of Alzhiemer's disease related research in the UK. Serving as chair on this advisory board has had a significant impact in helping ARUK direct their funding towards areas of greatest impact, as well as helping researchers build effective collborations resulting in meaningful insights improving patient care and informing policy.
 
Description "UK DRI IPSC platform to model Alzheimer's disease risk (IPMAR) "
Amount £1,866,149 (GBP)
Organisation UK Dementia Research Institute 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2021 
End 07/2023
 
Description Centre for Ageing and Dementia Research (CADR)
Amount £386,341 (GBP)
Organisation Welsh Assembly 
Sector Public
Country United Kingdom
Start 03/2018 
End 03/2020
 
Description Early-onset depression: Characterising development and identifying risks
Amount £763,680 (GBP)
Funding ID MR/R004609/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 11/2017 
End 11/2020
 
Description Genetics collaboration with Prof Bart De Strooper UK DRI programme
Amount £50,000 (GBP)
Organisation UK Dementia Research Institute 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2021 
End 04/2022
 
Description Genetics collaboration with Prof Bart De Strooper UK DRI programme
Amount £50,000 (GBP)
Organisation UK Dementia Research Institute 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2021 
End 04/2022
 
Description Harnessing the power of advanced imaging for dementia diagnosis
Amount $137,461 (USD)
Funding ID AARF-21-846366 
Organisation Alzheimer's Association 
Sector Charity/Non Profit
Country United States
Start 01/2022 
End 12/2023
 
Description Identifying genetic biomarkers of survival for bowel cancer to aid patient management
Amount £90,000 (GBP)
Organisation Tenovus Cancer Care 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2019 
End 09/2022
 
Description Inflammation in frontotemporal lobar degeneration - from diagnosis and prognosis to clinical trials - Dr M Malpetti
Amount £495,687 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2022 
End 02/2027
 
Description Leveraging human genetics to identify target populations for dementia therapeutics (Eisai/DRI), project grant
Amount £200,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2020 
End 02/2023
 
Description Pilot study to develop an instrument to capture broad-ranging neurodevelopmental problems in children with a genetic diagnosis of intellectual disability
Amount £48,502 (GBP)
Organisation Baily Thomas Charitable Fund 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2019 
End 10/2020
 
Description Pilot study to develop an instrument to capture broad-ranging neurodevelopmental problems in children with a genetic diagnosis of intellectual disability
Amount £48,502 (GBP)
Organisation Baily Thomas Charitable Fund 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2019 
End 10/2020
 
Description Polygenic risk scores for neurodegeneration and Alzheimer's pathophysiology
Amount £951 (GBP)
Organisation UK Dementia Research Institute 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2020 
End 11/2021
 
Description Profiling post-translational modifications of histone proteins as a determinant of Parkinson's susceptibility
Amount £232,404 (GBP)
Funding ID G-1502 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2016 
End 07/2018
 
Description Stratification of bipolar disorder: Harnessing clinical heterogeneity and genetics shared with other disorders
Amount £310,234 (GBP)
Funding ID Judith Allardyce 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2018 
End 12/2021
 
Description Stratification of bipolar disorder: Harnessing clinical heterogeneity and genetics shared with other disorders
Amount £310,234 (GBP)
Funding ID 209176 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2018 
End 06/2022
 
Description TRanslating Individual Alzheimer GEnetic risk into disease phenotypes [TRIAGE]
Amount € 420,000 (EUR)
Organisation JPND Research 
Sector Academic/University
Country Global
Start 04/2020 
End 04/2023
 
Description The development and implementation of polygenic risk algorithms for stratifying individuals for future cognitive decline due to Alzheimer's disease in non-symptomatic and early cognitive impaired subjects
Amount £288,555 (GBP)
Funding ID 104210 
Organisation Innovate UK 
Sector Public
Country United Kingdom
Start 03/2018 
End 02/2020
 
Description Validating prognostic biomarkers for colorectal cancer and determining their clinical utility
Amount £155,801 (GBP)
Organisation Cancer Research Wales 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2018 
End 10/2021
 
Description Your Beautiful Brain: Empowering Afro-Caribbean communities to support dementia research (Inspire Fund, ARUK) - Bauermeister et al.
Amount £22,646 (GBP)
Funding ID ARUK-IF2021-017 
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2022 
End 12/2022
 
Title Alzhemer's Disease Polygenic Risk Profiling 
Description This model used data from the powerful dataset comprising 17 008 cases and 37 154 controls obtained from the International Genomics of Alzheimer's Project (IGAP). Alzheimer's disease (AD) Polygenic risk scores were generated for 3177 cases and 7277 controls (GERAD data) and tested whether the alleles identified to associate with disease in IGAP sample are significantly enriched in the cases relative to the controls in the GERAD sample. The disease prediction accuracy was investigated in a sample of 3049 cases and 1554 controls (for whom APOE genotype data was available) by means of sensitivity, specificity, area under the receiver operating characteristic curve (AUC) and positive and negative predictive values. The best prediction accuracy AUC = 78.2% (95% confidence interval 77-80%) was achieved by a logistic regression model with APOE, the polygenic score, sex and age as predictors. 
Type Of Material Computer model/algorithm 
Year Produced 2016 
Provided To Others? Yes  
Impact This approach is used to create SNP arrays for AD prediction (for research only so far). 
 
Description BRACE 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution advice and training on genomic data analysis
Collaborator Contribution Investigating the genetic overlap between AD and other diseases or traits using polygenic risk scores in Avon Longitudinal Study of Parents and Children (ALSPAC)
Impact 1. Application of newly developed methodology (MR-Base), which hallows to do rapid high-throughput analysis of potentially interesting traits and environmental exposures. 2. Test for shared genetic susceptibility between AD and early life lipid levels, glycaemic, anthropometric, behavioral and cognitive traits in ALSPAC children
Start Year 2016
 
Description Bekhterev Research Medical Center for Psychiatry and Neurology 
Organisation St.Petersburg V.M.Bekhterev Psychoneurological Research Institute
Country Russian Federation 
Sector Public 
PI Contribution We provide expertise for genetic data analyses
Collaborator Contribution Genetic data of individuals of Russian ancestry is provided to us by the collaborators.
Impact This is a multidisciplinary collaboration, involves clinicians, bioinformaticians and biologists.
Start Year 2019
 
Description Collaboration with Dr Ece Kocagoncu for NTAD (Dr A Jafarian) 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaboration on data analysis of test-retest data from NTAD.
Collaborator Contribution Availability of NTAD data.
Impact Title: Test-reTest reliability of dynamic casual modelling of resting states MEG data of Alzheimer patients.
Start Year 2022
 
Description Collaboration with Eisai AiM Institute 
Organisation Eisai Ltd
Department Eisai Inc
Country United States 
Sector Private 
PI Contribution Consultancy on Polygenic risk score for clinical trials
Collaborator Contribution We are in the process of negotiations
Impact potentially this collaboration will pay for a time of a postdoctoral researcher
Start Year 2018
 
Description Collaboration with European Bioinformatics institute 
Organisation EMBL European Bioinformatics Institute (EMBL - EBI)
Country United Kingdom 
Sector Academic/University 
PI Contribution We plan to provide a software for polygenic risk score calculation and prosess the GWAS summary statistics for all current GWASes available in EBI GWAS catalogue
Collaborator Contribution provide data access to the GWAS catalogue
Impact This collaboration will provide the GWAS processed data to the research community for quick and efficient calculation of polygenic risk score for any disorder (stored in the EBI GWAS catalogue)
Start Year 2019
 
Description DPUK 
Organisation Medical Research Council (MRC)
Country United Kingdom 
Sector Public 
PI Contribution Steering Group member, DPUK work package lead.
Collaborator Contribution Creating Dementia Platform UK Data Portal
Impact In the process of creating on-line database with dementia cohorts, available in the UK and pipelines for data analyses. Multidisceplinary: genetics, bioinfirmatics, IT.
Start Year 2014
 
Description DPUK-2 (2020 - 2023) 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution Calculation of pathway specific PRS, relevant to the Neuroinflammation work package.
Collaborator Contribution Access to the DPUK cohorts
Impact data access to DPUK cohorts
Start Year 2020
 
Description EISAI 
Organisation Eisai Ltd
Department Eisai Europe Ltd
Country United Kingdom 
Sector Private 
PI Contribution we provide expertise and data analysis of pathways and gene networks related to neurodegeneration
Collaborator Contribution The partner provide expertise the the biological definition of neurodegenerative gene networks
Impact NA
Start Year 2019
 
Description GR@CE 
Organisation Catalan Health Institute (ICS)
Country Spain 
Sector Public 
PI Contribution we analyse the genome-wide data
Collaborator Contribution the collaborators provided the data to us
Impact it is a multidisciplinary collaboration, involve clinicians, biologists and bioinformaticians
Start Year 2020
 
Description GW4 fellowship 
Organisation Cardiff University
Department Brain Research Imaging Centre (CUBRIC)
Country United Kingdom 
Sector Academic/University 
PI Contribution co-supervisor; advice and training on genomic data analysis
Collaborator Contribution A researcher, Judith Harrison
Impact To explore disease pathways in Alzheimer's disease using MRI Biomarkers and Polygenic Scores
Start Year 2017
 
Description GWAIS 
Organisation University of Liege
Country Belgium 
Sector Academic/University 
PI Contribution We bring our expertise in AI and ML
Collaborator Contribution Collaborators bring their expertise in genetic interaction analyses.
Impact It is a multidisciplinary collaboration involving mathematicians, software developers and bioinformaticians
Start Year 2021
 
Description Global Alzheimer's Platform (GAP) 
Organisation Global Alzheimer's Platform Foundation
Country United States 
Sector Charity/Non Profit 
PI Contribution Development of processes to enable incorporation of the DPUK Trial Delivery Framework into a GAP European network
Collaborator Contribution Development of a GAP European network
Impact None
Start Year 2021
 
Description Harvard University 
Organisation Harvard University
Department Harvard Medical School
Country United States 
Sector Academic/University 
PI Contribution generation of polygenic risk scores
Collaborator Contribution provision of tissue samples and genotyped data
Impact none yet
Start Year 2019
 
Description Hong Kong University of Science and Technology 
Organisation The Hong Kong University of Science and Technology
Country Hong Kong 
Sector Academic/University 
PI Contribution Then HKUST will provide the summary statistics from the previous publication work (DOI: 10.1073/pnas.1715554115) to Cardiff to test if models derived from the Chinese population data can be used for disease classification in the European-descent population.
Collaborator Contribution The Cardiff will provide the models derived from the European population, and HKUST will help to examine if those models can classify AD in the Chinese population.
Impact NA
Start Year 2022
 
Description Innovate UK 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Consultancy
Collaborator Contribution Design of Alzhemer's disease chip
Impact In the process of designing of Alzhemer's disease SNP array. Multidisceplinary: medical genetics, bioinformatics, statistics
Start Year 2015
 
Description Join Dementia Research and Great Minds 
Organisation National Institute for Health Research
Department NIHR Join Dementia Research
Country United Kingdom 
Sector Public 
PI Contribution Developing the processes to incorporate Join Dementia Research volunteers into the Great Minds register, providing information on the Great Minds Register, promoting the use of Join Dementia Research on websites and at public events, updating the Join Dementia Research database for volunteers that have joined the Great Minds register.
Collaborator Contribution Developing the Join Dementia Research platform to enable links to the Great Minds register, promoting Great Minds as a collaborator organisation of Join Dementia Research.
Impact Over 1,500 Join Dementia Research volunteers have joined the Great Minds register
Start Year 2021
 
Description Leuven University 
Organisation University of Leuven
Country Belgium 
Sector Academic/University 
PI Contribution generation of polygenic risk scores
Collaborator Contribution sharing genotyped data and PRS
Impact none yet
Start Year 2018
 
Description MRC fellowship 
Organisation University of Bristol
Country United Kingdom 
Sector Academic/University 
PI Contribution advice and training on genomic data analysis
Collaborator Contribution A researcher, Dr. Emma Anderson, who is a highly productive junior researcher
Impact 1. To improve causal inference in mendelian randomization studies of dementia 2. To improve understanding of the genetic risk for dementia and trajectories of cognitive capabilities in aging 3. To identify modifiable risk factors that are related to dementia and cognitive decline
Start Year 2016
 
Description NEURO Cohort 
Organisation IMI Europe Limited
Country United Kingdom 
Sector Public 
PI Contribution Development of processes to hold and share data across European sites
Collaborator Contribution Development of technical processes, data model and a synthetic dataset
Impact None
Start Year 2021
 
Description National Taiwan University 
Organisation National Taiwan University
Country Taiwan, Province of China 
Sector Academic/University 
PI Contribution generation of polygenic risk scores
Collaborator Contribution still in negotiations
Impact still in negotiation
Start Year 2020
 
Description Stanford University 
Organisation Stanford University
Country United States 
Sector Academic/University 
PI Contribution generation of polygenic risk scores
Collaborator Contribution sharing genotyped data and PRS
Impact none yet
Start Year 2019
 
Description Syracuse University 
Organisation Syracuse University
Country United States 
Sector Academic/University 
PI Contribution still under negotiation
Collaborator Contribution data analysis consultancy
Impact none yet
Start Year 2019
 
Description Tissue Discovery Platform and EBiSC 
Organisation European Bank for induced pluripotent Stem Cells
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Development of processes to enable provision of access to induced pluripotent stem cells and associated phenotypic data
Collaborator Contribution Storage of induced pluripotent stem cells, contribution of phenotypic data, development of polygenic risk scores
Impact None
Start Year 2021
 
Description UC Irvine 
Organisation University of California, Irvine
Country United States 
Sector Academic/University 
PI Contribution generation of polygenic risk scores
Collaborator Contribution sharing genotyped data and PRS
Impact none yet
Start Year 2019
 
Title Application management system 
Description The Application management system allows the progress of applications through the application process to be tracked. The creation of the system allows multiple team members to track an application and to action any issues. 
Type Of Technology Webtool/Application 
Year Produced 2021 
Impact The system allows DPUK to expand the application system across a team of people and creates greater visibility across the administrative team. this will streamline applications and allow DPUK to increase the number of projects that it can administer. 
 
Title Effective 
Description We have developed a novel approach to account for multiple testing in genome-wide association studies as published in (Moskvina and Schmidt, 2008). The software is C++ code, which can be compiled for any computational platform (Windows, Unix, Linux). 
Type Of Technology Software 
Year Produced 2008 
Open Source License? Yes  
Impact The software was requested from the authors more than 10 times since the paper was published. We have made it now publicly available. 
URL http://github.com/DRI-Cardiff/Keffective
 
Title POLARIS 
Description We developed a novel approach to genetic set-based analysis and polygenic risk scoring, which accounts for linkage disequilibrium between SNPs and informs the analysis with previously reported effect sizes of a SNP's association to disease. We call this method POLARIS: POlygenic Linkage disequilibrium-Adjusted RIsk Score. 
Type Of Technology Software 
Year Produced 2017 
Open Source License? Yes  
Impact NA 
URL https://github.com/BakerEA/POLARIS
 
Title Project output tracking system 
Description The project outputs system is a webform system that contacts researchers on a regular basis to ask for project outputs update. data entered into the forms populate a database. 
Type Of Technology Webtool/Application 
Year Produced 2021 
Impact The project outputs system allows DPUK to automate output collection from researchers and to create a database of ouputs. This database will then be used to feed automated dashboards that will allow DPUK to visually track outputs. 
 
Description "The Motor Side of the FTD Spectrum" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Delivered talk to a mixed audience on the motor side of the FTD spectrum.
Year(s) Of Engagement Activity 2021
URL https://wfneurology.org/public/downloads/p9XPX/WCN-2021-Timetable-at-a-glance-Virtual-Congress-26.8....
 
Description 21/01/2021 - Data Science and Population Health Research. University of British Columbia, Canada 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Data Science and Population Health Research. University of British Columbia, Canada, 21/01/21.
Year(s) Of Engagement Activity 2021
 
Description 23rd National Dementia Conference: Talk on "Frontotemporal Dementia" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An update on FTD landscape and research output from Rowe group.
Year(s) Of Engagement Activity 2021
 
Description A formal working group, expert panel or dialogue - DPUK Annual Conference 2018: The power of cohorts 23 April 2018 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Attended one-day conference on using DPUK platform.
Year(s) Of Engagement Activity 2018
 
Description ARUK Clinical Conference. talk titled "What's new in Frontotemporal Dementia?" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This conference focussed on the themes of research, innovation, and implementing change in clinical practice.
Year(s) Of Engagement Activity 2021
 
Description ARUK Oxford Drug Discovery Institute 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited presenter at the ARUK Oxford Drug Discovery Institute (ODDI) Collaborators meeting
Year(s) Of Engagement Activity 2020
 
Description Advisor on tv drama on the theme of dementia 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact TV Soap script editorial advisor on dementia theme
Year(s) Of Engagement Activity 2021,2022
 
Description An invited interview at the Alzheimer's Research UK (ARUK) 2019 the Video Journal of Dementia 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact An interview for Video Journal of Dementia
Year(s) Of Engagement Activity 2019
URL http://www.vjdementia.com
 
Description An invited interview on issues facing researchers in Brexit for the Cross Party Group on Medical Research for Alzheimer's Society, UK 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Have provided an opinion on issues facing researchers in Brexit for the Cross Party Group in the Welsh Assembly looking at Medical Research
Year(s) Of Engagement Activity 2018
 
Description Brain Conference, talk given on "Apathy and Impulsivity" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Oral presentation during cognition and dementia theme of Brain conference 2021.
Year(s) Of Engagement Activity 2021
 
Description Brains for Dementia Research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A public engagement event for brain donors, their carriers and the researches who will access the data.
Year(s) Of Engagement Activity 2022
 
Description Cambridge Imaging Festival - Talk: New directions in dementia imaging 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This is a meeting of users and experts within the Cambridge NHS and academic community. Results and data are shared as well as new perspectives and applications for novel imaging methods.
Year(s) Of Engagement Activity 2021
URL https://www.mrc-cbu.cam.ac.uk/wp-content/uploads/2021/05/Programme-Cambridge-Imaging-Festival-2021.p...
 
Description Comment on the Polygenic Hazard scores for AD study by Tan et al (2019), Brain 142; 460-470 for Alzforum 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I have commented on a study which was covered on Alzforum about polygenic hazard scores for AD, and shared my opinion on their availability to the public.
Year(s) Of Engagement Activity 2019
URL https://www.alzforum.org/news/research-news/multi-gene-score-predicts-cognitive-decline-independentl...
 
Description DPUK LinkedIn channel 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact The DPUK LinkedIn channel now has 202 followers - more than twice as many as this time last year. We are also supporting a Vascular Health group aimed at engaging with industry.
Year(s) Of Engagement Activity 2021,2022
URL https://www.linkedin.com/company/dpuk
 
Description DPUK Twitter channel (@DementiasUK) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact DPUK's Twitter channel has gone from strength to strength, passing 5,500 followers in February 2022 - an increase of over 1,000 on the previous year. The channel achieved an average of 74,500 impressions (people reached) per month throughout 2021. Engagement with the channel is strong, with material about research outputs and awareness days being particularly well received.
Year(s) Of Engagement Activity 2021,2022
URL https://twitter.com/DementiasUK
 
Description DPUK YouTube channel 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The DPUK YouTube channel hosts video content including: DPUK podcasts; our new animation; interviews with event participants; recordings of Great Minds members' events; featured cohorts; monthly research round-up videos.
Year(s) Of Engagement Activity 2021,2022
URL https://www.youtube.com/channel/UC9OKgZG5Dq0RheCDV3upakw/
 
Description DPUK blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact The DPUK blog features a range of articles on topics including: different types of dementia; new podcasts; aspects of dementia research; experiences of those in dementia research. The blog is written in a lay-friendly style with the aim of being accessible to wider audiences. Recent blog titles include:

--Creutzfeldt-Jakob disease: a rapidly progressing form of dementia

--International Day of Women and Girls in Science

--Can dance help defend against dementia?

--How has modern technology shaped dementia care?
Year(s) Of Engagement Activity 2021,2022
URL https://www.dementiasplatform.uk/news-and-media/blog
 
Description DPUK featured in new Alzheimer Europe report on data sharing - 2021 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact he report, titled 'Data sharing in dementia research - the EU landscape', evaluates the legal and policy landscapes that dementia researchers have had to navigate in recent years, identifying key barriers and enablers for data sharing.

In his preface to the document, Jean Georges, Executive Director of Alzheimer Europe, says: 'In our 2019 report, "Estimating the prevalence of dementia in Europe", we showed that the number of people with dementia in Europe is likely to double by 2050, increasing from 9,780,678 to 18,846,286 in the wider European region. However, despite its increasing incidence, and high health and social care cost, research on dementia receives a disproportionately low amount of funding compared to other disease areas. As a result, there is an urgent need to maximise the utility of data from dementia research.

'Data sharing represents an important step towards meeting this need, and could help increase our understanding of the causes, treatment, prevention and care of dementia. However, there is still much to do to improve data sharing in dementia research - in particular, for clinical studies, where data sharing is not yet common practice.'

Writing in the report, DPUK's Director, Professor John Gallacher, describes how the DPUK Data Portal is 'democratising science'. He says: 'The DPUK Data Portal was developed in collaboration between the DPUK public-private partnership and research teams leading dementia cohort studies in the UK. As a data repository, the DPUK Data Portal facilitates access to data from over 3 million participants in studies such as Generation Scotland, LBC (Lothian Birth Cohort) 1936 and GERAD (Genetic and Environmental Risk in Alzheimer's Disease). Data from these cohorts cover a broad spectrum of variables, including genetic test results, brain imaging data and neuropsychological assessments of memory and brain function. Once access to data is approved, researchers are able to work with the curated data in a secure, remote-access environment, allowing them to develop new research questions and test or validate novel hypotheses on dementia.

'The DPUK Data Portal was built to democratise science. By providing remote access to data from 42 cohorts (n>3.4m) anyone, from Botwana to Brussels, can access some of the world's best data. All that's required is a good idea, internet connectivity, and an academic or industry email. Our data discovery tools and streamlined access procedures enable rapid access decisions (median time to decision: 23 days), with most datasets and most computational facilities, including analytical software, being free at point of use. Bona fide researchers work on approved projects within a secure and fully auditable multi-modal environment. Findings, but not data, may be exported for publication.

'Integrating imaging, genomic and health data is challenging, even for experts. So our datathon and summer school programme, targeting early-career researchers, is designed to introduce up-and-coming analysts to good data management and rigorous longitudinal analysis.

'In a spirit of collaboration, DPUK is working alongside data platforms around the world, including Dementias Platform Korea, Dementias Platform Australia, EMIF-AD, GAAIN, IALSA, SCAI, Cohen Veterans Bioscience, the Krembil Brain Institute, and ADDI, to create a global data alliance for dementia research.'
Year(s) Of Engagement Activity 2021
URL https://www.dementiasplatform.uk/news-and-media/latest-news/dpuk-featured-in-new-alzheimer-europe-re...
 
Description DPUK newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The DPUK newsletter goes out three times a year to a distribution list of around 450 DPUK stakeholders. It provides updates on DPUK developments, research outcomes, funding opportunities etc. it has an average open rate of around 31%, and a click-through rate of around 8%.
Year(s) Of Engagement Activity 2021,2022
 
Description DPUK website news section 
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 The news section of the DPUK website features articles about new developments in DPUK and outcomes related to the DPUK programme. For example, recent stories have been titled:

--People with both type-2 diabetes and high blood pressure have worse brain health than those with just one of these conditions

--Study finds hearing aid use is linked to slower decline in thinking skills

--New research suggests lowering brain cell excitability could help prevent Alzheimer's disease

--DPUK receives funding to run four art workshops to improve diversity in dementia research
Year(s) Of Engagement Activity 2021,2022
URL https://www.dementiasplatform.uk/news-and-media/latest-news
 
Description Data Science and Population Health : a Team Science Approach 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Data Science and Population Health : a Team Science Approach. Liverpool University MSc in Data Science lecture, 03/11/21.
Year(s) Of Engagement Activity 2021
 
Description Data Science and Population Health Research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Data Science and Population Health Research. University of British Columbia, Canada, 21/01/21
Year(s) Of Engagement Activity 2021
 
Description Dr M Malpetti - Host of Clinical Neurosciences Seminar & Conversation with Prof. JB Rowe 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Discussion on "From mechanisms to treatment, in disorders of frontotemporal lobar degeneration."
Year(s) Of Engagement Activity 2021
 
Description Dr Maura Malpetti - ROWE GROUP MEMBER Invited speaker at Alzheimer's Association International Conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Invited as a speaker on Brain inflammation in frontotemporal dementia. ISTAART conversation with patients and carers.
Year(s) Of Engagement Activity 2021
 
Description Dr Maura Malpetti - ROWE GROUP MEMBER Invited speaker at Alzheimer's RESEARCH UK 
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 TITLE: Brain imaging in dementia: for better understanding and treatment of human disease
Year(s) Of Engagement Activity 2021
 
Description Dr Maura Malpetti - ROWE GROUP MEMBER Organizing committee member "My memory clinic and me" Cambridge Festival 2021 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact My memory clinic and me" at Cambridge Festival 2021 - a session held for those interested in neurodegenerative diseases.
Year(s) Of Engagement Activity 2021
URL https://ftd.neurology.cam.ac.uk/events/201cme-and-my-memory-clinic201d
 
Description Eisai Ltd webinar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Invited presenter at Eisai Ltd webinar
Year(s) Of Engagement Activity 2020
 
Description Event - DPUK Autumn Academy - October 2021 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact DPUK's Autumn Academy was an annual, week-long series of presentations, lectures and workshops aimed at helping researchers enhance their data science skillset.

The inaugural event (held from 27 September to 1 October 2021) focused on the theme of cohort data analysis.

The Autumn Academy was aimed at experienced data analysts who are seeking to expand their repertoire of analysis techniques. Participants worked with cohort data in the DPUK Data Portal to learn new skills and work on real research projects.

Each day involved morning presentations and lectures on themed areas of dementia research and specific cohort analysis techniques. Afternoon sessions allowed participants to work on research projects using real-world data from cohorts in the DPUK Data Portal.

DPUK's Autumn Academy complements the Spring Academy, which is aimed at beginner analyst.

24 attendees (6 groups of 4 people) from across the globe attended virtually. The event received extremely positive feedback, with some saying 'Thanks to this academy, I have learned a lot about: available databases, multi-cohort and longitudinal analyses, and new research conducted or in progress on dementia and Parkinson's disease.
This academy is a great resource for researchers.'

'There were some useful introductory lectures on several techniques that I have not been exposed before, such as machine learning and SEM. That was very informative.'

'A great update including developments in global data initiatives, the latest research on PD and dementia, the basis of different ontologies and projects and a great insight in several very useful new (to me) data analysis models to get to grips with that will bring an advantage to be able to apply in data analysis of DPUK projects. Also need to get on with learning Python! I learnt too how much the DPUK data portal is constantly evolving, building connections internationally with other dementia platforms and with adding training such as this academy, is arming researchers with a wider selection of the latest tools to apply where suitable to aid their dementia research. The questions raised by attendees showed the variety of analysis levels we had but also that we are all working in our various ways towards the same unifying goals.'
Year(s) Of Engagement Activity 2021
URL https://www.dementiasplatform.uk/research-hub/data-analyst-training/dpuk-autumn-academy
 
Description Event - DPUK Datathon March 2021 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact DPUK Datathons are a key part of DPUK's data analyst training programme, placing researchers in multidisciplinary teams to generate valuable new findings in dementia research.

Attendees attended virtually and used cohort data in the DPUK Data Portal to explore a particular research question relating to dementia risk and progression. Around 15-30 hours of additional work beyond the formal workshops were required for research and collaboration. The event included expert introduction to selected population cohorts; four online cohort analysis workshops; support and guidance during offline periods; and potential for studies to develop into publications.

Taking place on 1-12 March 2021, at this event 15 attendees (3 groups of 5 attendees) were asked to develop new studies relating to 'Co-morbidities in Cognitive Decline, including Cardiovascular Disease' .

Attendees gained significant understanding on how to use the Data Portal for conducting their analyses.
Year(s) Of Engagement Activity 2021
URL https://www.dementiasplatform.uk/research-hub/data-analyst-training
 
Description Expert Panel Member on Keynote Programme 'Driving Real World Patient Centricity' - Genesis In-Person Conference - London, 9Dec21 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Industry/Business
Results and Impact Astrid Geeraert from Flanders Invest and Trade in London kindly passed me your details after we discussed your possible involvement in the Genesis conference session 'Driving Real World Patient Centricity' at 13.20 GMT on 9 December in London (1 Wimpole street). You can see the programme here. I am conscious you are already involved in the webinar session they organise on the 8 Dec, so just to clarify this panel suggestion would be for the main conference on 9 December in person.

To give you some background, Genesis is One Nucleus annual London conference where we discuss the main trends that developed in our industry in the past year including deal activity, therapeutics and technology developments. This particular panel discussion should reflect on how the patient centricity approach claimed by pharma is translated in concrete actions, including more technology and data support, and the various considerations in terms of regulatory, interoperability, data protection it is bringing. I have 3 panelists confirmed who are Mark Avery, Eastern Academic Health Science Network (EAHSN) involved in a very interesting programme linking patient engagement and improved data collection and processing: the Gut reaction programme, Philippa Brown from AstraZeneca to provide the pharma perspective and Natalie Wilson from NIHR who works on decentralised trial design and patient engagement. I think that Dementia is very interesting area to discuss these aspects of 'how' engaging with patients who may not be patients yet as pre symptomatic but how crucial the data collection is at this stage and given your engagement in the UK biobank it would be extremely relevant to the conversation.

Panelists:
Mark Avery, EAHSN
Phillippa Brown, AstraZeneca
Natalie Wilson, NIHR
Paresh Malhotra, Imperial College London
John Gallacher, University of Oxford

And I am really pleased that Mike Ward, Global Head of Thought Leadership has agreed to chair it as not only he is good in this role but also has a keen interest in the topic

2. Wherever they are situated in the ecosystem, what is the biggest challenge organizations, will face when attempting to establish a patient-centric culture, and how do you win over skeptics?
3. At which points in the medicines discovery, development and delivery timeline can the patient voice have a genuine and productive impact? Can you give real world examples of how the patient voice has made a real difference to plans at your organization?
4. How do you identify the patients who are going to be useful? How do you ensure that they are truly representative of people who matter? What challenges have you faced and how did you overcome them?
5. In this era of network connectivity and increased use of technology, what tools are you using or plan to use to be able to main a patient-centric trajectory?
6. Looking at how organizations can organize themselves are there any particular functions, activities or processes that are must-haves in order to be patient-centric? How can companies incentivise their employees to be patient-centric?
7. What does good patient-centricity look like and what metrics do you use to determine how well you are doing?
8. How easy is to identify the return on investment or other tangible benefits you can achieve by being patient-centric?
9. The development and delivery of medicines requires a whole ecosystem working well. While we have heard of the bilateral efforts of pharma and biotechs working with patients, what is being done to encourage other stakeholders, such as clinicians, regulators and health technology assessment agencies, to embrace patient-centricity?
10. Finally, what piece of advice would you give to others in the industry that might want to either introduce for the first time or enhance their patient-centricity efforts?
Year(s) Of Engagement Activity 2021
URL http://www.genesisconference.com/keynote-programme-2021/
 
Description Expert attendee at MND Collaborative Partnership workshop 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact The workshop will start the application process for a new funding initiative called the MND Collaborative Partnership, which has been established by a £4M commitment from the Funders. The Partnership aims to bring the research community together to tackle a major block to the translation of MND research. This is a unique and exciting opportunity for researchers to participate in an initiative that will drive MND research towards translation and lead to new treatments for MND. With significant advances in recent years delivering a better understanding of the MND disease aetiology, it is timely to address the blocks to translation. This is seen as a first step in advancing the research field toward the delivery of new treatments for patients with MND.

The Funders aim to support one substantive collaborative application involving multiple institutions that brings together the strengths of the UK MND research field and leverages multidisciplinary expertise and resources in the wider research landscape (e.g. DPUK , UK DRI, HDRUK etc). The applicants will be required to work together to agree a cohesive set of work packages to be delivered and who will lead/deliver each of those.

Further details of the call will be made available ahead of the workshop.

The Aim of the Workshop
• To launch the call and for the Funders to explain what they would like to achieve.
• To describe the application process and post award requirements.
• To discuss the MND research landscape and agree on the blocks to translation that could be feasibly addressed through a collaborative research effort supported by the Partnership.
• Present the resources (e.g. skills, infrastructure etc) available to the Partnership - discuss and agree any gaps.
• Discuss the process of development of the application, agree who will do what and begin assigning tasks
Year(s) Of Engagement Activity 2021
URL https://www.lifearc.org/funding/rare-disease-research-funding/mnd-collaborative-partnership/
 
Description Expert panel member on data sharing at World Dementia Council summit - December 2021 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The meeting will have a combination of plenary and parallel sessions on research and care and feature international dementia leaders from across the globe sharing their thinking and work. It will be hybrid although almost all people speaking in each session will be in person.

It would be great if you were willing to share your thinking on data sharing. The session will focus on this theme and address questions and themes such as how do we maximise the benefits of big data developing global cohorts, the comparability and sharing of data, and overcoming regulatory barriers?

Each speaker will have 7-8 minutes to present and offer introductory remarks.

Outcome: Organisers wanted to get in touch with a draft transcript of your contributions to the data sharing session we held at the virtual summit in December. Said it was a great session and we're keen to publish a transcript of this to share with our network.
Year(s) Of Engagement Activity 2021
URL https://worlddementiacouncil.org/sites/default/files/2021-12/Programme%20%5Brevised%5D%20-%20WDC%20S...
 
Description Frontotemporal Dementia Support Group National Annual Seminar 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Gave a talk titled "Frontotemporal Dementia: introduction and pathways to progress" with the Rare Dementia Support Group.
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=xP_yFWzb40g
 
Description Genesis Innovation workshop - virtual - 8 Dec 2021 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Join a panel discussion on access to patient data and translational medicine and the divergence between the EU and the UK's pathways. He thought that you might be better placed to join the discussion as head of DPUK.

Following on the conversations with Jan, we have summarized the topics/questions that will be used during the panel discussion on Wednesday 8 December. Please find them below.

• Set the stage:
o Thanks to new technologies and infrastructures, new frontiers can set using well-organized large patient data systems - have we entered a new era? Are we ready to combine data silos from all over the world into a global data system?
o When we talk e.g. about cancer research, inflammation and neurological diseases, how can access to large patient data sets accelerate research in these domains and ultimately improve care? See e.g. single-cell genomics or spatial transcriptomics technologies
• Driven by uses/applications:
• We hear a lot about patient data, health records, for uses in hospitals, remote monitoring etc
o What are the main drivers behind this surge in patient data? Which uses/applications will likely shape the roll out of well-organized patient data systems?
o In what way has the current pandemic an effect on this? Did it bring up new innovative ways, did it show a painful shortage in adequate systems?
• The current pandemic:
o Did it change the access to health records and will it drive the way we handle future health challenges
o Did it change or will it change the business model?
• Towards a national and international system?
o Can we foresee a national (or European) data records system? Is it feasible? Can it be scaled from local to national?
o What are the challenges on the level of governance (consent by patients e.g.)?
o Can we foresee an optimalization of patient treatments based on patient data outcomes (e.g. best practices, which hospital has the best care for a certain treatment)?
• A new business model?
o What is the commercial value of data and how is it perceived?
o Does this change the balance between payers-care givers-patients? Who pays for these national/international systems and data use?
o How can companies jump on the bandwagon and become successful in this new exciting and fast growing domain?
Year(s) Of Engagement Activity 2021
URL http://www.genesisconference.com/
 
Description Great Minds Public Event May 21 - Healthy Aging 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact On line members event with speakers and question time
Year(s) Of Engagement Activity 2021
URL https://www.greatmindsfordementia.uk/Join-us/great-minds-member-event-2021
 
Description Great Minds Public Event Nov 21 - Frontotemporal dementia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact On 18 November 2021 we brought together leading experts on frontotemporal dementia to explain what the condition is, how it's diagnosed and managed, and how researchers are working towards better treatments.

The speakers were Dr Siân Thompson (Consultant Neurologist, John Radcliffe Hospital, Oxford) and Professor James Rowe (Professor of Cognitive Neurology, University of Cambridge).
Year(s) Of Engagement Activity 2021
URL https://www.greatmindsfordementia.uk/Join-us/great-minds-members-event-nov-2021
 
Description Great Minds newsletter: April 2021 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Newsletter
Year(s) Of Engagement Activity 2021
URL https://www.greatmindsfordementia.uk/blog/great-minds-newsletter-april-2021?ref=image
 
Description Great Minds newsletter: January 2022 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Newsletter
Year(s) Of Engagement Activity 2021
URL https://www.greatmindsfordementia.uk/blog/great-minds-newsletter-january-2022
 
Description Great Minds newsletter: September 2021 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Our newsletter
Year(s) Of Engagement Activity 2021
URL https://www.greatmindsfordementia.uk/blog/great-minds-autumn-newsletter-2021
 
Description HDRUK QQR2 Public Health Research Vision 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact HDRUK QQR2 Public Health Research Vision. HDRUK national meeting, 26/04/21
Year(s) Of Engagement Activity 2021
 
Description International Society FTD Conference - "Magnetoencephalography (MEG) and frontotemporal dementia' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The International Conference on Frontotemporal Dementias (ICFTD) is l recognized as the primary venue for the synthesis, exchange, and dissemination of research evidence related to FTD, where experts from diverse backgrounds share recent discoveries, insights, and opinions. The talk presented hilighted our groups experiences with applying MEG methods to FTD patients in early research trials.
Year(s) Of Engagement Activity 2021
 
Description Interview for UKDRI news and events 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Spotlight on Prof Valentina Escott-Price
Year(s) Of Engagement Activity 2020
URL https://ukdri.ac.uk/news-and-events/spotlight-on-prof-valentina-escott-price
 
Description Invited member of Polygenic Risk Scoring Expert Panel 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited member of Polygenic Risk Scoring Expert Panel for Illumina company, Batimore, USA
Year(s) Of Engagement Activity 2019
 
Description Invited seminar at Icahn School of Medicine at Mount Sinai 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited seminar at Icahn School of Medicine at Mount Sinai, NY, USA
Year(s) Of Engagement Activity 2019
 
Description Invited session chair at Alzheimer's Association International Conference 2021, USA - Dr M Malpetti 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Chaired session on "Neuroimaging: Molecular Imaging of Novel Biomarkers for Neurodegeneration and ADRD" session at AAIC 2021 (07/2021 - Denver USA)
Year(s) Of Engagement Activity 2021
 
Description Invited speaker at 7TMRI group University of Cambridge- Dr Amirhossein Jafarian 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Title: Prior in DCM and MRS informed dynamic causal modelling.
Year(s) Of Engagement Activity 2021
 
Description Invited speaker at Alzheimer's Research UK conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited speaker at Alzheimer's Research UK conference, Harrogate UK
Year(s) Of Engagement Activity 2019
 
Description Invited speaker to FBRI Alzheimer's Disease Workshop 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited speaker to FBRI Alzheimer's Disease Workshop, Boston, USA
Year(s) Of Engagement Activity 2019
 
Description Invited talk "Integrating neuroimaging datasets: approaches for the harmonisation of white matter hyperintensity measurements", ADNI MRI Core meeting 21st December 2021 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited talk "Integrating neuroimaging datasets: approaches for the harmonisation of white matter hyperintensity measurements", Alzheimer's Disease Neuroimaging Initiative (ADNI) MRI Core meeting 21st December 2021. In the main focus of the presentation was the harmonisation approaches used in our recent Neuroimage paper (https://www.sciencedirect.com/science/article/pii/S1053811921004663?via%3Dihub). It also mentioned newer approaches under development at the Wellcome Centre for Integrative Neuroimaging (WIN), Oxford. The presentation sparked very useful discussions about the harmonisation needs and challenges of ADNI, to guide future directions of harmonisation techniques.
Year(s) Of Engagement Activity 2021
 
Description Invited talk "Structural MRI analysis with FSL", part of the educational webinar "Software for image analysis" organised by the NeuroImaging Professional Interest Area from the Alzheimer's Association ISTAART 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact The webinar "Software for Image Analysis" on Thursday May 27, 10am-12pm US ET and was organised by the NeuroImaging Professional Interest Area from the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART)
It included five speakers from the software tools SPM (J. Ashburner), FSL (L. Griffanti), FreeSurfer (J.E. Iglesias) and Nipy (A.Rana, S. Gosh) providing an introduction to their specific software. The event registered 177 viewers from 28 countries over 5 continents.
Year(s) Of Engagement Activity 2021
URL https://www.alz.org/research/for_researchers/grants/research-webinars
 
Description Invitee to roundtable - UK DRI's the impact of Aducanumab approval, implications and opportunities - June 2020 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The recent approval of Aducanumab by the FDA as the first therapeutic for Alzheimer's disease in 20 years through accelerated pathway is challenging the field. We will need to rethink the importance of early diagnosis, the role of biomarkers in dementia, patient stratification. It will affect patients' expectations and raises questions on cost/benefit issues for health systems.

The UK DRI in collaboration with ARUK is gathering the Dementia UK Ecosystem representatives and other key stakeholders for a virtual roundtable discussion to reflect on the impact of the FDA decision and its implications for the AD field.

Outputs:
Position paper on opportunities and priorities for the future of AD drug discovery.
Depending on the outcome of this initial event we may follow up with other roundtables focussed on specific aspects raised during the discussion. We will keep you informed about these follow-up events.
Year(s) Of Engagement Activity 2021
 
Description John Gallacher as Chair - A4D conference Arts 4 Brain Health: Social Prescribing as Peri-Diagnostic Practice for Dementia event - May 2021 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact An opportunity for GPs, social prescribers, museums, dance studios, music, drama, arts and health organisations, educationalists and funders, innovative and creative ageing specialists, local authorities and policy makers to come together and revolutionise the world of social prescribing for brain health.

Organisers said to John: Thank you for so generously giving your time on Friday and your superb chairing of A4D conference to help advance social prescribing to empower people at the onset of dementia to engage in arts to preserve brain health. Your wisdom and expertise gave the sessions gloriously informed flow. Your guidance was tremendous and it felt as if all were working together on a wave to drive this forward.

I am inviting chairs and speakers whom it would interest to sign a group letter to generate interest along these lines: to propose an amendment to the NICE guideline 97 (Published 20 June 2018 www.nice.org.uk/guidance/ng97
1.2 Diagnosis : Initial assessment in non-specialist settings, page 15:
It would be of real value if after 1.26 a recommendation could be inserted, advising referral to social prescribing for patient choice of a range of weekly activities to preserve brain health.

It would be great if social prescribing, recognised for its transformational effect on the mental health and wellbeing of the nation, were to help reduce loneliness and fear at the onset of dementia, through an adaptation woven into the NICE Diagnosis Guideline at the onset - in line with NICE guidelines for Mental Wellbeing and Independence for Older People?
Year(s) Of Engagement Activity 2021
URL https://arts4dementia.org.uk/spconference2021/
 
Description John Gallacher expert comment - RECON management committee 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact RECON is a research project - Reducing and preventing Cognitive impairment iN older age groups (the RECON programme). It aims to develop and test efficient internet-supported healthy behaviour/cognitive exercises to reduce cognitive decline among older age adults.

John Gallacher (as Director of DPUK) provides expert comment to the management committee of the research project.
Year(s) Of Engagement Activity 2022
URL https://www.southampton.ac.uk/medicine/academic_units/projects/recon.page
 
Description John Gallacher expert comment in Medical News Today article - Dec 2021 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact John provided a key voice amongst other leading experts on a recent study showing that 'Even light-intensity exercise might reduce dementia risk'.

NT also spoke with Prof. John Gallacher, director of Dementias Platform UK, at the University of Oxford in the U.K., who was not involved in the study. He agreed with Prof. Matthews, explaining that the findings were significant, but the question of causation was key.

"The idea that physical activity reduces the risk of dementia is entirely plausible, and these findings add to a growing body of evidence supporting this idea. The problem is reverse causation - that is, that people with dementia exercise less."

Paper: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2787226?utm_source=For_The_Media&utm_medium=referral&utm_campaign=ftm_links&utm_term=121621

- Prof. John Gallacher

"This study goes some way to addressing this by looking at incident events and dropping subjects with incident dementia in the first 2 years of follow-up. The dose-response curves are impressive," he continued.

Prof. Gallacher said that "[p]ossible mechanisms [for the association] include improved vascular health and improved immunological function. These mechanisms are likely to be interrelated and not independent of each other."
Year(s) Of Engagement Activity 2021
URL https://www.medicalnewstoday.com/articles/even-light-intensity-exercise-might-reduce-dementia-risk
 
Description John Gallacher speaker - Challenging times, Changing culture - Oxford, November 2021 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact Building on the experience of Oxford researchers during SARS-CoV-2, this lunchtime seminar will consider the structural context of scientific activity, the strategic impact of collaboration and the lived experience of scientists.

John presented on DPUK's collaborative ethos.
Year(s) Of Engagement Activity 2021
URL https://talks.ox.ac.uk/talks/id/365773e5-76e1-4d49-ac24-21dee988d961/
 
Description John as Chair - Launch of Arts 4 Dementia report 'A.R.T.S. for Brain Health - Social Prescribing as Diagnostic Practice for Dementia, Zoom, World Alzheimer's Day - Sept 2021 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact On World Alzheimer's Day, our 'A.R.T.S. for Brain Health' launch coincides the review of Arts 4 Dementia's 2021 social prescribing conference in The Lancet Neurology this month, by Professors John Gallacher and Alistair Burns.
Year(s) Of Engagement Activity 2021
URL https://arts4dementia.org.uk/2021/09/a4d-launches-social-prescribing-report-arts-to-preserve-brain-h...
 
Description John presentation - 'Linkages to metrics of the built environment' UK BIOBANK HEALTH-RELATED LINKAGES WORKSHOP - May 2021 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The aim of the workshop was to assess the scientific value and feasibility of linking to health related (but non-medical) data for the purposes of extending research into social sciences and environmental health.

16.40 - 16.55 Linkages to metrics of the built environment John Gallacher
Year(s) Of Engagement Activity 2021
 
Description John presentation - Rosetrees Interdisciplinary Workshop on neurodegenerative diseases of the brain 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Neurodegenerative diseases in the brain represent a wide range of different underlying pathologies with different clinical sequelae. Therapeutic interventions are currently relatively limited, reflecting the complexity of the diseases. Imaging with different, often combined, modalities (including CT, MRI, PET and SPECT) is a well-established clinical diagnostic tool, whilst imaging at a cellular and molecular level using animal models has also contributed significantly to our understanding of both the detailed anatomical structure and functional behaviour of the brain. Application of advanced statistical techniques and artificial intelligence has accelerated the extraction of detailed and clinically-useful information from images, though combining information from these different techniques across different temporal and spatial scales is challenging.

Groups based in physics, mathematics and computational science are increasingly engaged in developing novel tools and techniques which may be applied to the brain and neurodegenerative diseases, including the use of network theory to develop simple models of brain function, applying the understanding of soft matter and polymer physics to the process of protein aggregation, exploring the role of liquid-liquid phase separation in Alzheimer's disease, and developing models of blood flow and mass transport in the brain using computational fluid dynamics.

A single workshop in this wide-ranging and developing area will necessarily need to focus on a limited number of particular topics, though it is hoped that in so doing, the value of interdisciplinary approaches to other aspects of the field will be reinforced. The workshop will bring together researchers from the physical, biological and clinical sciences to focus on interdisciplinary approaches to the imaging of neurodegenerative diseases of the brain, including how multiscale imaging information may be combined with other biomarkers in order to better understand and model the extent, nature and impact of neurodegenerative disease.

The organiser reported: I just wanted to thank you for making such outstanding contributions to what I hope you will agree was a really stimulating meeting today. The value of working across disciplines was evident with the compelling examples you shared and it was also clear that there are numerous opportunities to build new partnerships in future.

I wanted to repeat that we would be very happy to consider applications for follow-on sandpits or w/shops and that the Physics of Life network will also be delighted to signpost the various collaborative platforms and networks.
Year(s) Of Engagement Activity 2022
URL https://www.physicsoflife.org.uk/neurodegenerative-disease.html
 
Description Keynote invited speaker, Genetics and epigenetics of mental disorders international conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Keynote invited speaker, Genetics and epigenetics of mental disorders international conference, St Petersburg 2019.
Year(s) Of Engagement Activity 2019
 
Description Keynote speaker at The University of Reading SIAM-IMA student chapter conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Undergraduate students
Results and Impact Keynote speaker at The University of Reading SIAM-IMA student chapter conference, Reading, UK.
Year(s) Of Engagement Activity 2019
 
Description MEGUK Oral Presentation by Dr Amirhossein Jafarian (Rowe Group) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Gave an oral presentation titled Multimodal Dynamic causal modelling
Year(s) Of Engagement Activity 2021
 
Description MRC 10 year Showcase 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact An academic afternoon sharing our latest findings and results of the research undertaken over the last 10 years of the centre. Followed by an evening panel event with Mike, James and Anita chaired by the VC and joined by Robin Buckle of MRC.
Year(s) Of Engagement Activity 2019
 
Description Mind over Chatter Podcast: Dementia 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact What causes dementia? And how do we diagnose and treat it? Is there anything we can do to stop ourselves from developing dementia? These are the crucial questions we'll be exploring with clinical neuropsychologist Barbara Sahakian, sociologist Richard Milne, and neurologist James Rowe. In this episode, we'll find out more about what dementia actually is, some surprising factors that increase a person's risk of developing dementia, and computer games that can actually help detect and diagnose dementia.
Year(s) Of Engagement Activity 2022
URL https://podcasts.apple.com/gb/podcast/dementia-risks-diagnosis-and-prevention/id1542332564?i=1000549...
 
Description My Memory Clinic and Me 
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 Presented at an event titled My Memory Clinic and Me as part of the Cambridge Festival in March 2021. The Cambridge Memory Clinic provides assessment and management for a wide range of memory and cognitive disorders, for example, due to neurodegeneration (Alzheimer's disease, Mild Cognitive Impairment, Frontotemporal dementia, Dementia with Lewy Bodies) and more. A discussion was help about memory clinics in the context of dementia. How they can help, and what to expect - including their role in leading research that matters to patient care. Short presentations followed by a live Q&A session with consultant neurologists.
Year(s) Of Engagement Activity 2021
URL https://ftd.neurology.cam.ac.uk/events/201cme-and-my-memory-clinic201d
 
Description National Advertising Campaign with Alzheimer's Research UK 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact National advertising campaign
Year(s) Of Engagement Activity 2021,2022
 
Description New DPUK animation 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact To mark the start of the second phase of DPUK, we commissioned a company called SciAni to produce a new animation outlining DPUK's key activities and how they are contributing to efforts to diagnose, treat and prevent dementia.
Year(s) Of Engagement Activity 2022
URL https://youtu.be/RAKdHSjTVdE
 
Description New DPUK website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact In 2021 DPUK's communications team lead the redevelopment of its website to ensure it provided a clear overview of DPUK's activities and would be as useful as possible for key audiences (eg study leaders, ECRs, industry representatives, dementia-interested public etc). Early feedback on the revamp has been positive, and further analysis will be undertaken this year.
Year(s) Of Engagement Activity 2021
URL https://www.dementiasplatform.uk/
 
Description News article on cognition research 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://www.news-medical.net/news/20220110/Poor-cognition-may-be-part-of-normality-in-older-age-rese...
 
Description News article on cognition research 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://www.healthline.com/health-news/dementia-can-be-detected-early
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://scitechdaily.com/cognitive-decline-is-not-always-a-sign-of-alzheimers-disease/
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://www.thehealthnewsexpress.com/alzheimer_disease_dementia/cognitive-decline-not-always-a-sign-...
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://en.brinkwire.com/health/alzheimers-disease-isnt-always-caused-by-cognitive-decline/
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://www.medica-tradefair.com/en/News/News_from_the_Editors/Cognitive_decline_not_always_a_sign_o...
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://allmymedicine.com/health-news/predicting-alzheimers-risk-how-useful-are-cognitive-tests/
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://www.medicalnewstoday.com/articles/predicting-alzheimers-risk-why-cognitive-testing-alone-may...
 
Description News article on how cognitive frailty may be part of normal aging 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The recent publication titled "Neurophysiological and Brain Structural Markers of Cognitive Frailty Differ from Alzheimer's Disease" was featured on a health website suggesting that poor cognition may be part of normality in older age.
Year(s) Of Engagement Activity 2022
URL https://talker.news/2022/01/11/elderly-people-can-show-signs-of-mental-decline-without-getting-demen...
 
Description OLS/UKRI cross sector specialist workshop/committee for new national dementia initiative strategy for 2022 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Meeting with No.10 officials on UK Dementia landscape.
Year(s) Of Engagement Activity 2021,2022
 
Description Organisation of training workshop for early career researchers of the DEMON network (International network for data science and AI applied to dementia) "Combining imaging data using machine learning" 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact The educational workshop 'Combining imaging data using machine learning' was held on 14-15 September 2021 and organised by the early career researchers and imaging working groups of the DEMON (International network for data science and AI applied to dementia) network (https://demondementia.com/). This two-day workshop provided theoretical learning and practical training for over 120 early career researchers on machine learning approaches to combine datasets (Day 1) and modalities (Day 2) in the context of dementia research.
The event consisted of two talks each day, followed by practical tutorials (three on Day 1 and two on Day 2) led by skilled facilitators and experts of the field. The main goal of the workshop was to inform early career researchers with experience or interest in using imaging data about innovative machine learning approaches and algorithms that may be used to characterise the structure and function of the nervous system, identify meaningful patterns and support clinical decisions in dementia.
The organising committee was also formed by early career researchers: Ludovica Griffanti (University of Oxford), Faeze Heidari (Iran University of Medical Sciences), Luiza Machado (Universidade Federal do Rio Grande do Sul), Maura Malpetti (University of Cambridge) and Henry Musto (Goldsmiths University).
Year(s) Of Engagement Activity 2021
 
Description Poster at AAIC Conference July 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Emily Baker, PhD Student (Supervisor - Prof Valentina Escott-Price) Poster at AAIC Conference - July 2017
Year(s) Of Engagement Activity 2017
 
Description Poster at ASHG Conference - October 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Emily Baker, PhD Student (Supervisor - Prof Valentina Escott-Price) Poster at ASHG Conference - October 2017
Year(s) Of Engagement Activity 2017
 
Description Presentation to the general public on the DRI program at the DRI launch in Cardiff 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact I have presented on my DRI program "Bioinformatics and Functional genomics" to patients, their families, journalists and other invited guests from the general public at the DRI launch in Cardiff, October 2018.
Year(s) Of Engagement Activity 2018
 
Description Press release - IXICO announcing their committed partnership to DPUK as it enters its second phase - Feb 2022 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact IXICO will be an industry member and stakeholder in the DPUK partner forum, working alongside 13 academic partners with expertise in dementia and big data research such as University of Oxford, Cardiff University, University of Cambridge and University of Edinburgh as well as pharma companies active in dementia research such as AstraZeneca, GlaxoSmithKline, Janssen Pharmaceutica NV and Araclon Biotech.

IXICO wanted to show they were dedicated to delivering insights in neuroscience. Their purpose is to advance medicine and human health by turning data into clinically meaningful information, providing valuable new insights in neuroscience and their goal is to be a leading proponent of artificial intelligence in medical image analysis. They will achieve this by developing and deploying breakthrough data analytics, at scale, through our remote access technology platform, to improve the return on investment in drug development and reduce risk and uncertainty in clinical trials for our pharmaceutical clients.
Year(s) Of Engagement Activity 2022
URL https://ixico.com/news-and-resources/press-releases/engagement-in-big-data-research-dementia-collabo...
 
Description Press release on dementia and hearing loss paper 
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 Media (as a channel to the public)
Results and Impact A press release on a new paper co-funded by DPUK and involving DPUK scientist Dr Sarah Bauermeister was picked up widely in national and local print, online and broadcast media. Highlights included an article in the Sun newspaper (link below). The paper outlined the links between mild cognitive impairment and hearing aid use.
Year(s) Of Engagement Activity 2022
URL https://www.thesun.co.uk/health/17747984/how-halve-risk-developing-dementia-hearing-aids/
 
Description Professor John Gallacher LinkedIn profile 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Establishing a LinkedIn profile for John has ensured that DPUK's reach goes wider and reinforces John's influence as a expert and leader in the field of dementia. John has over 300 connections, and had posts related to DPUK receive views of over 700. Older contacts of DPUK have gotten in touch with John to reconnect and investigate collaboration again.
Year(s) Of Engagement Activity 2021
URL https://www.linkedin.com/in/john-gallacher-phd-afbpss-cpsychol-ffph-b86b08210/
 
Description Professor John Gallacher Twitter profile - @John_ejg 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Created a social media presence on Twitter for Prof John Gallacher. This has allowed greater reach of DPUK activities and established John as a knowledgeable and respected leader in the field with potential for impact
Year(s) Of Engagement Activity 2021
URL https://twitter.com/John_ejg
 
Description Reinvigorating health registries during COVID for rapid policy analyses. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Reinvigorating health registries during COVID for rapid policy analyses. Norwegian Health Registry Conference, Oslo, 16/11/21. Helse- og Kvalitetsregisterkonferansen 2021 | Keynote presentation.
Year(s) Of Engagement Activity 2021
URL https://www.registerkonferansen.no/
 
Description Report/transcript of discussion - World Dementia Council virtual summit 2021 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Session 1: Data sharing
Transcript from the WDC Summit 2021 session looking at data sharing for dementia research, assessing how we can maximise the benefits of big data developing global cohorts, the comparability and sharing of data, and how we can overcome regulatory barriers.
Year(s) Of Engagement Activity 2022
URL https://worlddementiacouncil.org/sites/default/files/2022-02/Summit%202021%20-%20Transcript%20-%20Da...
 
Description Rowe Group Member Dr NEGIN HOLLAND gave talk: Synaptic imaging in dementia and neurodegenerative disease @ Cambridge Imaging Festival 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This is a meeting of users and experts within the Cambridge NHS and academic community. Results and data are shared as well as new perspectives and applications for novel imaging methods.
Year(s) Of Engagement Activity 2021
URL https://www.mrc-cbu.cam.ac.uk/wp-content/uploads/2021/05/Programme-Cambridge-Imaging-Festival-2021.p...
 
Description Session Chair: Cognition at Brain 2022 Conference 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Chaired session on congnition with research presentations on:
1. Transdiagnostic approaches to cognitive disorders and their underlying brain
pathology
2. Dissociable brain microstructural diffusivity changes underlying visual short
-term memory deficits in Alzheimer's disease.
3. Bayesian Brains and the origin of functional disorders.
4. 'Socioeconomic status impacts cognitive and socioemotional processes in healthy
ageing: evidence from Latin American older adults.
5. Noradrenergic treatment of cognitive disorders: big news from the blue spot.
Year(s) Of Engagement Activity 2022
URL https://thebrainconference.co.uk/brain-conference-schedule/
 
Description Specialist PSP Sub-group @ Movement Disorder Society International Conference: UHF 7T Imaging 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Expert panel meeting on imaging and Progressive supranuclear palsy.
Year(s) Of Engagement Activity 2021
 
Description Talk at - Alzheimer's Association International Conference 2021, Dr Maura Malpetti 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact "Microglial activation and atrophy in frontal cortex predict executive dysfunction in frontotemporal dementia" - Alzheimer's Association International Conference
Year(s) Of Engagement Activity 2021
 
Description Talk by Dr M Malpetti at (ISTAART) Scientific Meeting: What have we learnt from PET in FTD in the last 10 years? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact "What have we learnt from PET in FTD in the last 10 years" - ISTAART FTD and Neuroimaging PIAs webinar: An update on neuroimaging in frontotemporal dementia (virtual event)
Year(s) Of Engagement Activity 2021
 
Description Talk by Dr M Malpetti at Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) Scientific Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk title: Neuroinflammation in medial temporal regions predicts cognitive decline in dementia with Lewy bodies
Year(s) Of Engagement Activity 2021
 
Description Talk by Dr M Malpetti at Clinical Neurosciences Away Day, Cambridge University 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Talk title: Neuroinflammation in frontotemporal lobar degeneration: a target for treatment?
Year(s) Of Engagement Activity 2021
 
Description The Dementia UK Ecosystem and Innovations in biomarkers @ Cambridge Memory Meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact The aim of this Cambridge-wide memory group is to encourage interaction between the many local labs working on the psychology/neuroscience of short- and long-term memory, both human and non-human. The talk given to this audience gave an overview of the key UK institutions and partners involved in dementia research aimed at identifying new biomarkers for plausibale clinical translation.
Year(s) Of Engagement Activity 2021
URL http://www.memlab.psychol.cam.ac.uk/CAMM/index.html
 
Description The Economist Podcast interview - John Gallacher and his reaction to the FDA's approval of aducanumab to treat Alzheimer's disease - 2021 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact John was interviewed by The Economist podcast when the FDA granted conditional approval to a drug for the treatment of Alzheimer's disease, called aducanumab.

His podcast, and subsequent DPUK subjects broadcasting the piece, garnered strong reaction. It established John and DPUK further as an expert in the dementia field.
Year(s) Of Engagement Activity 2021
URL https://www.economist.com/podcasts/2021/06/08/a-flicker-of-light-for-the-treatment-of-alzheimers?utm...
 
Description Tim Sandhu Talk @ CamBrain Cambridge Neuroscience Society 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact Oral presentation to junior researchers or those interested in neuroscience.
Year(s) Of Engagement Activity 2021
 
Description Voice of Islam - Dementia 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Discussion on voice of islam broadcast on the theme of dementia to raise public awareness, especially within the Muslim community.
Year(s) Of Engagement Activity 2022
 
Description Voice of Islam Radio - Dementia Theme 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Voice of Islam broadcast discussion on dementia.
Year(s) Of Engagement Activity 2021
 
Description the UK Pharmacogenetics and Stratified Medicine Network 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited presenter at the UK Pharmacogenetics and Stratified Medicine Network Workshop
Year(s) Of Engagement Activity 2021