UK Dementias Platform

Lead Research Organisation: University of Oxford
Department Name: Psychiatry

Abstract

The UK Dementias Platform (UKDP) is a radically new approach to dementias research, bringing together data from around 2,000,000 study participants from 22 cohorts to try and discover the causes of dementia and to find out ways of slowing it down. The platform has been funded to the level of £4.5M and invited to apply for a further £7.5M.

To achieve our goals of discovering the causes of dementia and finding out ways to slow it down, we will analyse data collected over many decades from throughout the UK to identify targets for drugs studies.

We will also enrich strategically selected cohorts to provide resources for dementias research in general. This will involve finding out how the early dementia processes begin, how our genes affect our risk of dementia and where our body goes wrong in maintaining and repairing itself.

There are many practical challenges involved in doing this work including knowing how to assess dementia in large studies where having everyone examined by a doctor would be prohibitively expensive. Another challenge is how to measure cognitive decline in the population as when people begin to decline they are frequently less motivated to do cognitive tests.

There are also important ethical issues surrounding this work and we have specific projects looking at ethical legal and social issues surrounding taking part in detailed measurement studies as well as in considering brain donation.

To help make an impact as soon as possible, we will work closely with industry partners who are best placed to turn basic scientific knowledge into effective therapies.

Even if we cannot cure dementia in the short term, it would count as a success if we found ways of slowing it down so that nobody need lose their dignity as they grew older.

Technical Summary

The UK Dementias Platform (UKDP) is a radically new approach to dementias research, providing a highly efficient and cost-effective translation pipeline from basic discovery through to early phase trials (Fig 1). By combining the analytic and statistical power of >20 clinical and population cohorts representing 2M participants and creating a large readiness cohort, UKDP will create an optimal environment for basic discovery activities relevant to the clinical progression and human impact of dementia. Although UKDP is intended as a strategic and sustainable resource generating increasing scientific benefit over time, it will also deliver short and medium term benefits through the analysis of existing data, the enrichment of strategically selected cohorts, developing new ways of working with industry, and generating interest and further funding for dementias research generally.

A single portal informatics hub (funded in stage 1) will be used for integrating data from participating cohorts and triangulating evidence between cohorts. The stage 2 proposal focuses on providing strategic resources for EM by enriching strategically selected cohorts, addressing key methodological issues and pump-priming a programme of EM studies.

Further development of the platform is anticipated as the opportunities it provides are more widely understood. For example, predicated on the ability of the platform's ability to provide accurately risk stratification, MRC and NIHR have recently funded a deep and frequent Phenotyping (DFP) feasibility study with a view to providing a further £5M for the full study. The DFP project may be considered a stage 3 development of UKDP and is an example of how UKDP can be used to leverage further resource for dementias research.

Planned Impact

The platform will use several vehicles to deliver impact.

These were described in stage 1.

In summary:

For the academic community, in addition to the proposals mad in stage 1, we will develop a network of partnerships and operate a system of working groups to actively consult the UK academic community and world experts on the direction, technologies and collaborations of the platform. Our aim is to 1) base the science of the platform on the best information available, 2) create momentum in dementias research by being inclusive of, and synergistic with, other initiatives.

For industry, partnership discussions are already underway with exchanges of ides, interests and needs between academic and industry stakeholders. Industry have identified their need for access to conversion (early MVI to dementia cohorts and for experimental medicine studies to conform to regulatory requirements.

We remain committed to raising the profile of contemporary debate about dementia and its treatment. We wish to encourage a culture of commitment to solving this problem. By increasing awareness at all levels of society we intend to leverage resources for the platform and for dementia research in general, to increase awareness of the need for earlier interventions and better targeted treatment in general by health service providers and the public alike.

Engagement with the general public and with patients and carers is a very important part of our mission. This serves not only to communicate our research findings and their relevance but also to address such issues as stigma in society and the research culture in the NHS in relation to dementia and older people. In addition to using the platform web-site to communicate to the general public, we will also liaise with charities and advocate groups such as Age UK and the Alzheimer's Society to promote our work and findings and to engage them in shaping the work programme.

In addition we will have a dedicated free-phone number available 6 days a week and a communications officer at 50% FTE over 5 years whose responsibility is to develop and implement a communications and public engagement strategy.

Organisations

Publications

10 25 50
publication icon
Ahmad S (2018) Disentangling the biological pathways involved in early features of Alzheimer's disease in the Rotterdam Study. in Alzheimer's & dementia : the journal of the Alzheimer's Association

publication icon
Andrews JPM (2019) Non-invasive in vivo imaging of acute thrombosis: development of a novel factor XIIIa radiotracer. in European heart journal cardiovascular Imaging

publication icon
Andrews JPM (2019) Cardiovascular F-fluoride positron emission tomography-magnetic resonance imaging: A comparison study. in Journal of nuclear cardiology : official publication of the American Society of Nuclear Cardiology

publication icon
Andrews JPM (2019) Cardiovascular F-fluoride positron emission tomography-magnetic resonance imaging: A comparison study. in Journal of nuclear cardiology : official publication of the American Society of Nuclear Cardiology

publication icon
Ardalan ZS (2019) Management of Patients With Erythropoietic Protoporphyria-Related Progressive Liver Disease. in Liver transplantation : official publication of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society

 
Title 3 video interviews with research participant, senior industry scientist and senior academic researcher 
Description Three video interviews to bring the importance of dementia research and the DPUK project to life for our general public audience through our social media channels (YouTube and Twitter). 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact Increased awareness of DPUK and the need for investment new ways of working in dementia research. 
URL https://www.youtube.com/watch?v=FYlkBpb_D_A
 
Title Animation - 'Introducing Dementias Platform UK' 
Description This animation has been used on the homepage and About pages of the DPUK website to give the general public an easily accessible overview of Dementias Platform UK aims and work. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact Our audience research has shown that the general public find this animation useful in understanding the complex DPUK project. 
URL https://www.dementiasplatform.uk/about
 
Title Cognitive resources leaflet and webpage 
Description A promotional leaflet designed to direct the target audience of dementia researchers to an information hub with guides and resources for using cognitive data 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact The web pages have received 2,532 visits 
URL https://www.dementiasplatform.uk/cognition
 
Title DPUK 5 year celebratory event video 
Description A video round-up of the celebratory event held in September 2019 shared with those invited to attend the event and on social media 
Type Of Art Film/Video/Animation 
Year Produced 2019 
Impact The video received 102 views on youtube and social media clips of the video uploaded to twitter were viewed 1,567times. 
URL https://youtu.be/Q9QIhA9Fo8A
 
Title DPUK Linked in profile 
Description To generate greater engagement with industry DPUK is now as an active Linked In page with regular news updates 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact Following our drive for greater engagement with researchers in industry with an interest in data and dementia we now regularly post updates. We have an engagment rate of 9.39% and have grown followers by 44% in six months. 
URL https://www.linkedin.com/company/18392913
 
Title DPUK newsletter (produced 3 times a year) 
Description The DPUK newsletter is sent three times a year to researchers, related organisations in the dementia research sector, industry companies working in dementia research and development and major funders in the dementia research sector. It features updates on the developments and opportunities in DPUK. 
Type Of Art Artefact (including digital) 
Year Produced 2017 
Impact Increased awareness of DPUK resources amongst key audience groups: scientists; funders and industry. 
 
Title Data Portal communications pack 
Description This pack was produced an distributed to DPUK's 16 partner organisations (10 universities and 6 pharmaceutical companies) to support the promotion of the Data Portal campaign. 
Type Of Art Artefact (including digital) 
Year Produced 2018 
Impact 150% increase in traffic driven to DPUK website; increased awareness amongst the dementia research community of DPUK's tools, resources, training and funding opportunities for researchers. 
 
Title Data Portal press release 
Description Press release to all major science publications and science desks of print media at the launch of the DPUK Data Portal. 
Type Of Art Artefact (including digital) 
Year Produced 2017 
Impact None we are aware of. 
 
Title Data Portal resource hub 
Description Developing a hub of resources and guides that support Data Portal users from applying to analysing data. This resource hub includes fact sheets on using big data, applying for Data Portal data and learning about using the virtual desktop with a synthetic data set. Additionally there are two explainer videos describing how to identify the data you need and analyse it within the virtual desktop 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact The resource page has been visited X times, videos have been viewed X times and the factsheets have been visited 3,521 times 
URL https://www.dementiasplatform.uk/for-researchers/data-portal-getting-started-with-cohort-data
 
Title Datathon Leaflet 
Description A highly visual printed promotional postcard for distribution to target audiences at talke, conferences and events to drive recruitment to datathon events in Swansea, Exeter, UEA and Ulster universities. 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact The total number of visitors to the datathon recruitment pages was 828 
 
Title Datathon recruitment web pages 
Description The datathon pages promote and provide guidance for those interested in joining a datathon workshop. All other datathon communication - leaflets, social media,enews - direct the audience to this hub. 
Type Of Art Artefact (including digital) 
Year Produced 2019 
Impact Over the course of the year the datathon web hub received 6,728 page views. Social media posts reached 107,073 impressions and resulted in 3,108 engagements Each datathon was fully booked - with a total of 92 attending workshop events 
URL https://www.dementiasplatform.uk/for-researchers/data-portal-getting-started-with-cohort-data/datath...
 
Title Great Minds animated graphic 
Description An animated graphic explaining the value of cohort participants to dementia clinical studies and trials. 
Type Of Art Film/Video/Animation 
Year Produced 2019 
Impact Helped support the recruitment of 45 people to the Great Minds clinical studies register pilot, showing their interest in taking part in future dementia research. 
URL https://www.youtube.com/watch?v=TTLyYF021uA
 
Title Information sheet 
Description This information sheet was sent out to our 16 partners (10 partner universities and 6 partner pharmaceutical companies) for inclusion, alongside a news feature, in internal newsletters. 
Type Of Art Artefact (including digital) 
Year Produced 2018 
Impact Increased engagement from research scientists based at universities and in industry with DPUK's resources on the DPUK website and DPUK Data Portal website. Attendance at DPUK training webinars and expressions of interest/applications for DPUK's 'Discovery Award' funding opportunities for researchers. 
 
Title Leaflet 
Description Leaflet produced for distribution at the Alzheimer's Research UK conference. 
Type Of Art Artefact (including digital) 
Year Produced 2017 
Impact The leaflet helped to raise awareness amongst the community of dementia researchers of DPUK's free tools and data resources for researchers. 
 
Title Leaflet - 2017 
Description Leaflet produced for distribution at the Alzheimer's Association International Conference, attended by over 6000 researchers. 
Type Of Art Artefact (including digital) 
Year Produced 2017 
Impact Increased awareness amongst the dementia research community worldwide about DPUK's tools and data resources for researchers. 
 
Title Leaflet - 2018 
Description Leaflet included in the Alzheimer's Research UK 2018 conference delegate pack (going to 650 people). 
Type Of Art Artefact (including digital) 
Year Produced 2018 
Impact At the time of writing the conference itself has not yet taken place. 
 
Title MEG & ME 
Description With ISSF funding, out team held a series of public open evenings to discuss research of interest to the public, to define a sho set of questions and design the experiments to answer them, and then carry it out using MEG. The project was filmed, and presented at a final public discussion meeting at the Cambridge Science Festival 
Type Of Art Film/Video/Animation 
Year Produced 2015 
Impact The project clearly caught he public's imagination, and over 100 members of the public took part across the weeks. https://vimeo.com/116423919 presents a final summary video 
URL https://vimeo.com/116423919
 
Title Magazine article 
Description John Gallacher was interviewed for this feature in Optima magazine (a lifestyle magazine) about the importance of participation in health research. 
Type Of Art Artefact (including digital) 
Year Produced 2017 
Impact Feature in Optima magazine. 
URL http://www.optimamagazine.co.uk/read/style/health/1628-banking-time
 
Title Miscellaneous branded images for DPUK and Dataportal 
Description Various images, such as the Dataportal background image, genetic computer background and DPUK twitter badge for email signatures. 
Type Of Art Image 
Year Produced 2019 
Impact - Researchers utilising the Data portal virtual desktop will now have no doubt what they are using - Any press conducted at events such as Datathons, will now capture the DPUK logo on the background of the virtual desktop, instead of the standard windows background. - Traffic is now drawn to the DPUK twitter page each time DPUK staff sends an email. 
 
Title Misplaced in Space (September 2017) 
Description A collaboration with University of East Anglia, to portray the impact of Dementia 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2017 
Impact A film of the exhibition is available; 
URL https://vimeo.com/229381641
 
Title New blog space on DPUK website 
Description Creating a space for new and relevant content for the target audience where DPUK researchers and partners can outline their research, achievements or experience. 
Type Of Art Creative Writing 
Year Produced 2019 
Impact New blogs are key content on twitter and LinkedIn for engagement. The are regularly shared on social media. The blog section of the website has been viewed 3,461 times in a year with an average read time of over a minute 
URL https://www.dementiasplatform.uk/blog
 
Title Social media videos 
Description Event-based video interviews for release on social media. 
Type Of Art Film/Video/Animation 
Year Produced 2019 
Impact Ove the past 12 months we have created 45 social media interview videos with a range of DPUK researchers, external ECRs, Senior researchers and Professors and Charity managers. these have been viewed 23,085 times in the past year. Many of these can be seen on our Youtube channel 
URL https://www.youtube.com/channel/UC9OKgZG5Dq0RheCDV3upakw/videos
 
Title Study recruitement web page 
Description A public news and information page designed to allow the public to sign-up to be considered as a participant of a small imaging study. This page was part of a local and media campaign calling for volunteers 
Type Of Art Artefact (including digital) 
Year Produced 2020 
Impact 27 people registered their interest in participating. 
URL https://www.dementiasplatform.uk/NTAD
 
Title Video of DPUK conference 
Description Video of highlights from the DPUK annual conference 2017. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact Use in the promotion of the 2018 annual conference amongst our key audiences. 
URL https://www.youtube.com/watch?v=TAsOtdaHkO0
 
Title Women and girls in sience campaign 
Description The campaign for Women and Girls in Science day 2020 (11 Feb) included a video of DPUK women researchers describing how working in science is exciting and challenging, a blog from a senior researcher on working in science and having a career break posted on the University of Oxford science blog pages and illustrations of DPUK researchers by illustrator Nina Chhita on Twitter and Instagram. 
Type Of Art Artefact (including digital) 
Year Produced 2020 
Impact The video and shorter video clips were viewed a total of 3,045 times Oxford Uni Tweeting of the blog received 20 retweets and 105 likes The DPUK social channels gained 38,325 impressions and 511 engagements DPUK Senior researcher's blog on the University of Oxford, Dept Psychiatry and DPUK website was viewed 2308 times 
URL http://www.ox.ac.uk/news/science-blog/seven-children-20-year-career-break-and-return-cutting-edge-de...
 
Description "Talented Women for a Successful Wales" report commissioned by the Welsh Government
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
URL http://gov.wales/docs/det/report/160308-women-in-science-en.pdf
 
Description ABN clinical research and academic committee, London representative
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Academy Medical Sciences Council Member
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Academy Medical Sciences Fellow
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Academy Medical Sciences Wales Ambassador
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Advisor WHO (World Health Organisation)
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
Impact N/A
 
Description Alzheimer Association Educational Workshop: The basics of fluid biomarkers in AD - speaker
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
 
Description Associate Director, UK Dementia Research Institute (UKDRI)
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Attend technical meeting on the Implementation of the Global Action Plan on Public Health Response to Dementia
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Attendance to TRC-D Steering Committee Meeting
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL https://www.nihr.ac.uk/partners-and-industry/industry/collaborate-with-us/dementia.htm
 
Description Attended Association of British Neurologist's annual conference and delivered citation for ABN medallist
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Calman Training
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Canadian Consortium on Neurodegeneration in Aging (CCNA)
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Chief Scientific Advisor to Alzheimer's Research UK
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Chief Scientific Advisor, Welsh Government
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Clinical Expert for a NICE Scientific Advice consultation on Alzheimer's Disease
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Contributor to a review of current dementia recruitment registers and its role for the public and research landscape
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Dementia Programme Board - oversee the implementation of the PM's Challenge on Dementia to 2020
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Dementia Research Institute VIP Visit
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Deputy Chair, ABN Cognitive Disorders Advisory Group
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact N/A
 
Description Deputy Director DPUK
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Membership of a guideline committee
 
Description EPAD LCS sample access committe
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Expert in government-supported monthly ADD Chip 5m cohort meetings
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact John Gallacher is a regular expert at monthly ADD Chip design meetings - a group which aims to form a cohort [supported by the UK Government, Charities and Industry (pharma, diagnostic & digital)] which looks to create the largest risk stratified population (including by genotype) in the world. It wants to involve 5 million healthy individuals, aged 40-75. Recent successes include ADD now being set up as a company limited by guarantee with one employee (Interim COO FR). CEO interviews have taken place and CEO could be in post as early as April. CRUK to host the CEO for the first year until the company has physical premises.
 
Description German Centre for Neurodegenerative Diseases (DZNE) scientific review
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description International Advisory Committee for Healthy Brains for Healthy Lives (HBBL), McGill
Geographic Reach North America 
Policy Influence Type Participation in a advisory committee
Impact The $100 million HBBL program seeks to improve the mental helath across Canada across all age groups.
 
Description Invitation to participate in Challenge on Dementia 2020 workshop - May 2019
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact John was personally invited to participate in a working group on research and funding as part of the government's review of the Challenge on Dementia 2020 on the afternoon of Friday 24th May. Earlier in 2019, the government published a report summarising the views of stakeholders on the progress of the Challenge on Dementia so far and set out actions for the remaining 2 years of the Challenge. The government is also looking beyond 2020 and invited stakeholders to identify priorities for a post-2025 strategy. As part of this work DHSC are facilitated 5 working groups to consider a maximum of 3 recommendations for each group. The 5 working groups will cover: 1. Technology 2. Research/funding 3. Dementia awareness 4. Risk reduction 5. Health and care delivery Martin Rossor and Hilary Evans were asked to chair the research/funding working group which will took place on Friday 24th May from 2pm-5pm in Conference Room 1, DHSC, 39 Victoria Street, London. John was asked to join these discussions and to help consider which 3 recommendations are priorities for the field to help us move the research forwards towards effective treatments.
URL https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020
 
Description Invited as expert to contribute to discussion with Chris Whitty, Chief Scientific Adviser, Department of Health and Social Care re: polygenic testing to improve health
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact A draft final integrated table has been created, incorporating all inputs received, for Polygenic Risk Sscore performance for different diseases (integrated updated online version here: https://docs.google.com/spreadsheets/d/1XFbVkjpNeNexH6NvWzEcrQIF88ogQ9b6NPXy-FfeOCI/edit?usp=sharing). This table also includes the PRS generated by Genomics PLC across a number of disorders including their validations from UKBiobank. Albeit that we have amassed some very useful starter data on the spreadsheet, given the rich and diverse debate generated by this process, it seems the exam question we were set by Chris is far from answered. The next steps could be to: (i) agree a 'short-list' of conditions as being the currently most plausible (ii) examine in detail existing analyses for clinical impact and health economic impact for these disease use-cases (iii) evaluate predicted trajectory of PRS with future GWAS (ie what will PRS do in 5,10,15 years with delivery from additional GWAS) (iv) current research priorities for PRS evaluation/implementation. Breast Cancer, Coronary Artery Disease and ?colorectal cancer likely remain front-runners (driven primarily by population incidence). It was discussed whether further dialogue is warranted, and if so, what would be the best way of continuing it and bringing in those with the requisite focused expertise? For example, potentially another modest-sized closed meeting: delineated data-driven sessions focused on really unpicking health utility/specific diseases use cases and ways forwards.
URL https://www.gov.uk/government/people/christopher-whitty
 
Description Invited leading figure to UK Dementia Ecosystem Summit (hosted by UK DRI)
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact John Gallacher was invited as a leading figure in dementia to invite to participate in a small meeting with other leaders of the UK Dementia Ecosystem to be held towards the end of March in central London. The meeting was an opportunity for him and other leaders to inform each other of their goals and aspirations, identify possible areas of synergy and collaboration and discuss the most pressing issues. Goals and achievements for the meeting included: Promote awareness of vision and goals of each participating organisation. - Define potential points of synergy and collaboration in the short, medium and long term, particularly in the following areas: • Development of tools for translational research and experimental medicine • Understanding the breadth of symptoms that make up the spectrum of dementia: communication between basic and clinical science • Care research and technology - Define a clear message engaging the Government to sustain dementia research.
URL https://ukdri.ac.uk/news-and-events/dementia-ecosystem-uk-action-through-alliance
 
Description JPND SAB Meeting - re-launching its Strategic Research and Innovation Agenda (SRIA)
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Keynote presentation on DPUK at Westminster Health Forum policy conference - 'Improving dementia outcomes in England: research, personalised care and health and social care integration'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The agenda: Progress on meeting the goals of the Dementia 2020 Challenge and priorities for moving forward post-2020; Developing an integrated approach to improving dementia outcomes in Birmingham; Integrating health and social care - workforce development, creating dementia-friendly communities and the role of technology; Personalised care in practice - addressing barriers, increasing access and supporting patient choice; Key issues for regulating dementia services; Next steps for dementia research - funding, translating research into practice and improving patient participation: Supporting research to improve dementia outcomes; Data in the digital age for dementia research: Dementias Platform UK; Collaboration with industry partners: and Encouraging the translation of research into clinical practice.
URL https://www.westminsterforumprojects.co.uk/publication/dementia-care-in-England-19
 
Description Long-term and regular involvement in the IHCC Policy Working Group
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
Impact John is a representative on the Policy team (Team C) for the formation of the International Hundred K+ Cohorts Consortium (IHCC). The IHCC represents the 100 largest cohorts globally (mostly those who include over 100k participants) and aims to improve the work of cohorts on an international scale,. IHCC have facilitated discussions on improving prospects for compatibility of cohort elements (e.g., instruments, data formats, phenotype measures, & consents), promoting data and specimen sharing & open access policies, examining potential for collaborative genome sequencing/analysis, and exploring feasibility of a searchable global cohort registry. The overall charge of the Policy Team is to create a policy agenda to facilitate and optimise impact of assembling cohorts. A draft IHCC Guidance for Collaboration with Industry has been created, with thoughts of also producing a publication.
URL https://ihcc.g2mc.org/teamc/
 
Description MRC Dementias Platform UK 'Open Science Champion' and Steering Group member
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
URL http://www.mrc.ac.uk/research/facilities-and-resources-for-researchers/dementias-platform-uk/governa...
 
Description Medicines Discovery Institute MDI
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Member of the Committee on the Medical Effects of Air Pollutants (COMEAP) advisory committee
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Member, Biobank access committee, Brains for Dementia Research
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description NMHRI management
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description Participation as expert in Population Research Resource landscape review - November 2019
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact John was invited as expert to comment on a landscape review and lessons learnt document from existing population research resource initiatives. Wellcome is working with the MRC and the ESRC to identify what kind of new Population Research Resource is required to capitalise on the rich longitudinal data and biological samples from the wealth of UK large-scale, long-term population based studies (including cohort studies). Their focus is on enabling cross-study research through the discoverability and sharing of longitudinal data and samples, linking these data with administrative, health and other routine records, and encouraging best practice. At the Population Research Resource Workshop held on the 24th May 2019 (which John also participated) a list of existing initiatives that support longitudinal population studies in the UK were identified, along with a list of functions that these initiatives may provide. Wellcome have now commissioned to write a short report by November 29th 2019 to provide them with a description and "lessons learnt" review of these existing initiatives. The first stage of the review was to provide a one-page summary of existing initiatives from publically available information on the websites of these initiatives that describes the resource, its purpose and objectives, and the functions provided. The second stage of the review was to contact the lead of each initiative by email to obtain further information to clarify these summaries that will form an appendix in the report. John completed an in-depth questionnaire and 1:1 interview on his view of the landscape.
 
Description Press conference
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Proposal sent to UK Biobank titled 'Proposal: Subjective memory questions in UK Biobank'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Proposal to UK Biobank titled 'Proposed cognitive tests for an enhanced UK Biobank cognitive battery'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Report sent to UK Biobank titled 'Observation of the enhanced UK Biobank cognitive assessment'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Report sent to UK Biobank titled 'Recommendations on the retention of cognitive tests in the UK Biobank cognitive test battery'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Report to UK Biobank on the UK Biobank cognitive assessment titled 'Test characteristics of the enhanced UK Biobank Cognitive Assessment'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Representative on SAIL Databank Scientific External Advisory Board (Dec 2019)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact The SAIL Scientific External Advisory (SEA) Board discussed and generated actions in relation to topics such as new data types / usages and resulting information governance challenges; Data proportionality v. the demand for programme level data, and Development of a Public Involvement & Engagement policy/strategy for SAIL.
URL https://saildatabank.com/
 
Description Speaking at ARUK Policy conference: Looking forward: Towards dementia treatment - planning for the requirements to deliver new treatments for AD in the UK
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Standard Operating Procedures sent to UK Biobank - SOPs for IQCODE
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Strategic Coordination of Health of the Public Research Committee (SCHOPR) to develop a set of public health research principles and goals to guide funding decisions
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a national consultation
 
Description Talk at International Cohorts Summit, Iceland - April 2019
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
Impact IHCC convened the second International Cohorts Summit in Reykjavik, Iceland April 2019 with the intent of developing the scientific agenda to drive the research and collaboration between cohorts and present Team activities and progress on goals that were established as the result of the first International Cohorts Summit held in March 2018. The primary objectives of this meeting were to: Identify scientifically meritorious cross-cohort research projects and identify international collaborators willing to organize and participate in them Develop an IHCC scientific agenda to bring forward to funding bodies The International Cohorts Summit was conceived by the Heads of International Research Organizations (HIROs) chaired by Jeremy Farrar of the Wellcome Trust, with an inaugural summit held in March 2018 in Durham, North Carolina, USA, organized by the Global Genomic Medicine Collaborative (G2MC), with the goal of enabling leaders of large-scale longitudinal cohorts worldwide to share best practices, discuss data sharing, explore standards, discuss common challenges, and explore the potential for a large(r) collaborative sequencing strategy. From that Summit, the International HundredK+ Cohorts Consortium (IHCC) was formed, with teams assembled to address the actions identified in this Summit. John Gallacher was invited to contribute alongside the PIs of the most influential cohorts and their funders internationally to discuss remedies to challenges and opportunities faced by cohorts. This particular summit involved giving a pitch by Dr Sarah Bauermeister on behalf of Team C's work on policy. The pitch was on a precision medicine approach to multi-morbidity in cardio-metabolic disease and dementia, and the resources required for this. The DPUK Data Portal was demonstrated as a world-leading tool in data curation and analysis instrumental to the cause. Sarah was approached several times from international funding and policy leaders in the field, and engaged for further collaboration. One major impact was an invitation from China to attend a workshop discussing how DPUK and the Data Portal could aid research in Asia.
URL https://ihcc.g2mc.org/ics2019/
 
Description UCL ageing event - cultivating research connections across the university: organising committee and plenary speaker
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description UK Biobank - long-term and regular attendance as a representative on the UKB Steering Committee
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact John is a long-term and regular representative at the tri-annual UKB steering committee meetings in London, as well as UKB's annual International Scientific Advisory Board. John provides expertise and leadership on cognitive and psychological assessments. His work for UK Biobank provides a regular touch-point for DPUK, with the platform benefiting from John's detailed and up-to-date knowledge UKB's resources and direction.
URL https://www.ukbiobank.ac.uk/steering-committee/
 
Description UK representative - European Academy of Neurology Dementia Panel
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in a advisory committee
 
Description UK/Italy Imaging working group research partnership
Geographic Reach Europe 
Policy Influence Type Participation in a advisory committee
 
Description Vice Chair and Chair Elect, Advisory Council US Alzheimer's Association ISTAART
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description WHO's Global Dementia Observatory discuss the implementation of the global action plan on public health response to dementia 2017-2025
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
 
Description Work group to establish a Danish brain research centre - Lundbeckfonden, The Brain Prize
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Working Group Lead on Emeritus Professor John Bell's response to potential increase in Dementia governmental funding
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact Following a recent a Conversative goverment pledge (https://www.bbc.co.uk/news/election-2019-50523507), it is anticipated that there will be significant new UK Government funding for dementia research. As additional funding will probably be focussed in areas identified as particularly challenging to drug discovery, it will probably leverage in considerable matched, pre-competitive industry funding. Further, it is likely that this investment will be in translational research - complementing existing Dementia Research Institute activity in basic research. In the -omics era major discoveries driven by genomics, proteomics and metabolomics have uncovered the key protein pathways, cellular pathology within the brain and the systemic effects of the disease involving the vascular system and the gut-liver-brain axis. In next decade, bridging the gap between target discovery and clinical interventions is one of the major challenges. The interest of industry appears to be focussed on target validation and human experimental medicine. To make a strong Oxford offer, it was proposed to need to take stock of current strengths and identify key gaps. It was thought this relevant work in Oxford takes place across multiple Departments and will require coordination, as will the relevant infrastructure. This aim of this workshop was to develop Oxford's strategy for expanding dementia research, maximising the potential for both local research and for collaborations with national programmes including the Dementia Research Institute (DRI), Dementia Platform UK (DPUK) and ARUK Drug Discovery Institutes (DDI). The three major areas of focus for the meeting included target discovery and validation; Big Data and multi-omics data integration, and Experimental Medicine. As a result of the meeting, John Gallacher was asked to be chair of one of the four working groups ('Biobanks/Clinical follow-up studies/Epidemiology'). A decision was taken to build Oxford's translational research offering in dementia to a higher level allowing Oxford to secure transformational funding in the £50m+ range from industry, government and philanthropic sources. Each group was asked to: i) map current landscape ii) map future landscape required iii) identify capability gaps. iv) Propose how we can fill capability gaps and outline a. the required capability i.e. new posts, new equipment, shared resources, new/existing technology, new approaches etc. b. the resources/funding required. c. a timeline e.g. if recruitment is required for a strategic appointment or new equipment is ordered/infrastructure built In a document structured as suggested above. John's working group was asked to identify a clinical lead seeing patients in Oxford to:- a. Ensure we are biobanking rich patient material in Oxford (CSF, skin biopsies etc..) b. Build up our UK clinical network in advance of the bid with inter-institutional alliances to complement our translational offering. A revised draft of a white paper is being produced, setting out the overall scientific vision. The more detailed granular output of the working groups will be fed into this i.e. the additional capability building required, resources necessary and implementation timeline.
 
Description World Dementia Council
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description "Clinician training partnership: vascular contribution to dementia": Clinical Training Partnership awarded to W Whiteley, JM Wardlaw, G Hardingham, CW Ritchie, C Smith, A Williams, K Horsburgh, H Whalley, S Munoz Maniega
Amount £225,000 (GBP)
Funding ID 3699 
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2019 
End 07/2022
 
Description "Small Vessel Disease - Spotlight on Symptoms (SVD-SOS) - Improving recognition of symptoms and signs of progressing cerebral small vessel disease-related brain damage to prevent cognitive decline, dementia and stroke" (Doubal F, Wardlaw, JM)
Amount £24,962,394 (GBP)
Funding ID SA PG 19\100068 
Organisation Stroke Association 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2019 
End 07/2022
 
Description 1946 ARUK
Amount £1,824,093 (GBP)
Funding ID ARUK-PG2014-1946 
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2014 
End 06/2017
 
Description A longitudinal amyloid-PET/MRI study of the 1946 birth cohort. ARUK-PG2017-1946.
Amount £1,216,062 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2017 
End 06/2019
 
Description A standardized, multilingual, mini linguistic state examination (MLSE) for classifying and monitoring primary progressive aphasia.
Amount £358,924 (GBP)
Funding ID RG82683 
Organisation St George's University 
Sector Academic/University
Country Grenada
Start 01/2017 
End 12/2019
 
Description ABBUK Brains for Dementia Research Programme (extension)
Amount £2,598,988 (GBP)
Organisation Alzheimer’s Brain Bank UK 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2018 
End 03/2021
 
Description ABBUK Brains for Dementia Research Programme (extension)
Amount £404,390 (GBP)
Funding ID 504291 
Organisation Alzheimer’s Brain Bank UK 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2013 
End 03/2018
 
Description ARUK ODDI collaboration: Phenotypic drug discovery in Parkinson's
Amount £200,000 (GBP)
Organisation University of Oxford 
Department Alzheimer's Research UK Oxford Drug Discovery Institute
Sector Charity/Non Profit
Country United Kingdom
Start 01/2017 
End 12/2020
 
Description ARUK Oxford Pilot Investigating the effect of tau on axonal transport and tau release in MAPT-iPSC cortical neuron models
Amount £4,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start  
 
Description ARUK Oxford Pilot Optogenetic light source and controller for 96/384-well plates to allow uniform illumination of wells inside a cell-culture incubator.
Amount £4,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start  
 
Description ARUK Pilot Analysis of tau secretion in iPS differentiated neuronal cultures
Amount £4,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start  
 
Description ARUK network pilot grant
Amount £5,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2018 
End 03/2019
 
Description Autophagic flux 
Amount £317,137 (GBP)
Organisation Michael J Fox Foundation 
Sector Charity/Non Profit
Country United States
Start 09/2017 
End 08/2019
 
Description BRC award to UCL/H (Dementia Theme)
Amount £5,000,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Public
Country United Kingdom
Start 04/2017 
End 04/2022
 
Description Biomedical Research Centre Dementia Theme
Amount £118,000,000 (GBP)
Funding ID RG85367 
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Public
Country United Kingdom
Start 04/2017 
End 03/2022
 
Description Brain Network Analysis in Neurodegenerative Tauopathies
Amount £22,391 (GBP)
Funding ID RG89925 
Organisation The Evelyn Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2018 
End 12/2019
 
Description Brain Research Trust
Amount £219,355 (GBP)
Organisation Brain Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2016 
End 03/2019
 
Description Brain Research Trust
Amount £219,355 (GBP)
Organisation Brain Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2016 
End 03/2019
 
Description Brains for Demention Research Programme
Amount £225,571 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2013 
End 03/2018
 
Description British Heart Foundation - Cardiovascular mechanisms linked to cerebral amyloid b deposition and cognitive decline: a sub study of INSIGHT 46
Amount £273,844 (GBP)
Funding ID PG/17/90/33415 
Organisation British Heart Foundation (BHF) 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2018 
End 04/2022
 
Description Cerebrovascular health in older adults at a genetic risk for dementia
Amount £3,970 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2018 
End 08/2018
 
Description Clinical research infrastructure
Amount £6,995,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 09/2015 
End 09/2020
 
Description Clinical research infrastructure
Amount £1,500,000 (GBP)
Organisation University of Cambridge 
Sector Academic/University
Country United Kingdom
Start 03/2016 
End 03/2016
 
Description DRI Costs
Amount £1,123,799 (GBP)
Organisation UK Dementia Research Institute 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2017 
End 08/2022
 
Description Deconvoluting the dementia phenotype using functional genomics and computational approaches
Amount £537,913 (GBP)
Organisation Government of Wales 
Department Welsh European Funding Office
Sector Public
Country United Kingdom
Start 01/2018 
End 10/2022
 
Description Deep and Frequent Phenotyping; combinatorial biomarkers for dementia experimental medicine
Amount £6,301,078 (GBP)
Funding ID MR/N029941/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2016 
End 09/2020
 
Description Dementias Platform
Amount £6,618,190 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 06/2014 
End 06/2019
 
Description Drake Foundation: Effects of head injury the NSHD 1946 birth cohort.
Amount £60,852 (GBP)
Organisation The Drake Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2017 
End 04/2019
 
Description Drake Foundation: Head Injury, cognition and imaging correlates of dementia in the Insight 46 cohort
Amount £60,852 (GBP)
Organisation The Drake Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2016 
End 04/2019
 
Description EM7 Connectivity changes in early Alzheimer's Disease.
Amount £94,384 (GBP)
Funding ID MC_ST_CBU_2019 
Organisation MRC Doctoral Training Program 
Sector Academic/University
Country United Kingdom
Start 10/2019 
End 09/2023
 
Description EM7 NTAD: new-therapeutics-in-alzheimers-disease
Amount £1,200,000 (GBP)
Organisation MRC Dementias Platform UK 
Sector Academic/University
Country United Kingdom
Start 06/2018 
End 09/2020
 
Description EM7 UCB-J PET
Amount £370,000 (GBP)
Organisation Janssen Research & Development 
Sector Private
Country Global
Start 09/2019 
End 06/2020
 
Description EU IMI-2. Amyloid imaging to prevent Alzheimer's disease (AMYPAD)
Amount £934,500 (GBP)
Organisation European Social Survey: European Research Infrastructure Consortium (ESS ERIC) 
Sector Charity/Non Profit
Country European Union (EU)
Start 10/2016 
End 09/2021
 
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 Enhancing autophagic flux in Parkinson's disease
Amount $663,000 (USD)
Organisation Michael J Fox Foundation 
Sector Charity/Non Profit
Country United States
Start 10/2017 
End 09/2019
 
Description Expanding DPUK genetics and integrating with inflammation/immunity research
Amount £100,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2018 
End 03/2019
 
Description Farr NLP open source software development
Amount £48,470 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 11/2017 
End 10/2018
 
Description GENetic Frontotemporal dementia Imaging - Second phase (GENFI-2)
Amount £2,613,582 (GBP)
Funding ID MR/M023664/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 05/2015 
End 04/2020
 
Description HDRUK
Amount £3,003,650 (GBP)
Funding ID NIWA1 
Organisation Health Data Research UK 
Sector Private
Country United Kingdom
Start 05/2018 
End 04/2023
 
Description High content imaging of iPSC-derived neurons to dissect mechanisms of Parkinson's
Amount £80,000 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2017 
End 09/2021
 
Description Improving prevention trials in AD through imaging
Amount £249,965 (GBP)
Funding ID 261 (AS-PG-15-025) 
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2016 
End 02/2017
 
Description JPND
Amount £350,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 05/2016 
End 05/2019
 
Description JPND EUFIND
Amount £30,000 (GBP)
Organisation EU Joint Programme - Neurodegenerative Disease Research (JPND) 
Sector Public
Country European Union (EU)
Start 10/2016 
End 10/2017
 
Description MIND-MAPS
Amount £977,920 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2017 
End 03/2020
 
Description MJ Fox Therapeutic Pipeline Program: Enhancing autophagy flux in Parkinson's disease
Amount $330,000 (USD)
Organisation Michael J Fox Foundation 
Sector Charity/Non Profit
Country United States
Start  
 
Description MRC COEN
Amount £150,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 06/2016 
End 06/2018
 
Description MRC Momentum Award (Microglial interactions in Alzheimer's Disease)
Amount £4,300,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 01/2017 
 
Description MRC Momentum Award (Microglial interactions in Alzheimer's Disease-informatics)
Amount £1,000,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start  
 
Description MRC Partnership Award (Dementias Platform UK Stem Cell Partnership)
Amount £1,200,000 (GBP)
Funding ID MR/N013255/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 07/2016 
End 06/2020
 
Description MRC Partnership grant for UK7T
Amount £220,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 03/2016 
End 03/2019
 
Description MRC UK Dementia Research Institute Award - Dementia Bench to Bedside
Amount £6,000,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2017 
End 10/2022
 
Description MRC-KHIDI UK-KOREA PARTNERING AWARDS
Amount £100,000 (GBP)
Funding ID MC_PC_18006 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 04/2017 
End 04/2018
 
Description MRC-NIH UK-US Dementia Research Collaboration programme
Amount £11,000 (GBP)
Funding ID MC_PC_17204 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 04/2018 
End 03/2019
 
Description Mental Health Pathfinder Award
Amount £1,000,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start  
 
Description New Therapeutics in Alzheimer s Disease (NTAD) - ARUK
Amount £100,000 (GBP)
Funding ID RG89702 
Organisation Versus Arthritis 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2017 
End 08/2020
 
Description Oxford Biomedical Research Centre (BRC)
Amount £45,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Public
Country United Kingdom
Start  
 
Description Oxford Medical Sciences Divisions Returning Carer Fund (Tara Caffrey)
Amount £5,000 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start 02/2017 
End 05/2017
 
Description Predicting dementia outcomes using simple, non-invasive assessments: a prospective population-based study
Amount £207,016 (GBP)
Funding ID MR/P001823/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 08/2016 
End 07/2019
 
Description Restoring noradrenergic function to improve apathy in Parkinson s disease to Claire O Callaghan
Amount £49,677 (GBP)
Funding ID RG90797 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2017 
End 07/2018
 
Description Rosetrees: Detecting and tracking brain changes in early Alzheimer's Disease
Amount £248,130 (GBP)
Funding ID M668-CD1 
Organisation Rosetrees Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2017 
End 08/2020
 
Description Sanofi/Genzyme: Modulating GBA activity as a Parkinson's disease therapy
Amount £200,000 (GBP)
Organisation Sanofi 
Department Genzyme Therapeutics Ltd
Sector Private
Country United Kingdom
Start 11/2016 
End 10/2017
 
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 The Airwave Health Monitoring Study (AHMS). An Occupational Cohort Study of the British Police Forces
Amount £1,941,097 (GBP)
Funding ID MR/R023484/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 05/2018 
End 04/2023
 
Description The physiology of dementia: magnetoencephalographic investigation of brain networks in frontotemporal lobar degeneration and Alzheimer's disease in preparation for experimental medicine studies.
Amount £49,592 (GBP)
Funding ID RG84879 
Organisation Versus Arthritis 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2016 
End 09/2017
 
Description Travel grant for conference for Bryan Ng
Amount £300 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2020 
End 03/2020
 
Description UKRI Innovation / Rutherford Fund Fellowships at HDR UK
Amount £560,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 02/2018 
End 02/2021
 
Description Uniting iPSCS and CRISPR/Cas9 screens- a platform to model and interrogate genetic disease in Oxford
Amount £80,000 (GBP)
Organisation University of Edinburgh 
Department Institutional Strategic Support Fund
Sector Charity/Non Profit
Country United Kingdom
Start 12/2017 
End 06/2019
 
Description WP7 ARUK Pilot Award: "Disentangling contributions of the hippocampus and striatum in efficient memory-guided attention"
Amount £3,990 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 02/2020 
End 08/2020
 
Description WP7 EU Innovative Training Network: European School of Network Neuroscience (awarded to Kia Nobre & Mark Woolrich)
Amount € 3,966,875 (EUR)
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 10/2019 
End 10/2023
 
Description WP7 German Research Foundation Fellowship to Dr Anna-Katharina Bauer (supervisor Kia Nobre)
Amount € 60,000 (EUR)
Organisation German Research Foundation 
Sector Charity/Non Profit
Country Germany
Start 09/2019 
End 08/2021
 
Description WP7 Marie Sklodowska-Curie Postdoctoral Fellowship to Dr Méadhbh Brosnan (supervisor Kia Nobre)
Amount € 212,934 (EUR)
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 09/2019 
End 08/2021
 
Description WP7 Royal Society Newton Advanced Fellowships and Mobility Grants to Dr André Cravo
Amount £60,000 (GBP)
Organisation The Royal Society 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2019 
End 08/2021
 
Description Wales/NI substantive site. HDR UK
Amount £3,003,650 (GBP)
Organisation Health Data Research UK 
Sector Private
Country United Kingdom
Start 05/2018 
End 04/2023
 
Description Wellcome Trust Clinical Research Training Fellowship
Amount £174,791 (GBP)
Organisation Wellcome Trust 
Department Wellcome Trust Bloomsbury Centre
Sector Charity/Non Profit
Country United Kingdom
Start 04/2016 
End 03/2019
 
Description Wellcome Trust Clinical Training Fellowship
Amount £174,791 (GBP)
Organisation Wellcome Trust 
Department Wellcome Trust Bloomsbury Centre
Sector Charity/Non Profit
Country United Kingdom
Start 04/2016 
End 03/2019
 
Description Weston Brain Institute - Developing blood based biomarkers to detect pre-clinical Alzheimer's disease and predict progression
Amount £329,663 (GBP)
Organisation Weston Brain Institute 
Sector Private
Country Canada
Start 12/2020 
End 12/2020
 
Description What makes strategic stroke strategic? Multimodal imaging and network methods to predict dementia after strategic stroke
Amount £4,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2017 
End 08/2017
 
Description Wolfson Foundation: Ageing Cohort
Amount £887,193 (GBP)
Organisation The Wolfson Foundation 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2013 
End 03/2019
 
Title Alzheimer's Disease Data Intiative (ADDI) Workbench 
Description Development of a proof of concept system for international data platform data sharing and collaboration. The tool is available to other members of the international working group.. 
Type Of Material Improvements to research infrastructure 
Year Produced 2020 
Provided To Others? Yes  
Impact Development of technology solutions for data cataloguing, data identification and federated computation that can facilitate greater cross-platform data access and therefore scientific developments. 
 
Title BIOFIND output 
Description The JPND BioIND project was led from MRC-CBU, as an international collaboration to standardize and harmonize methods for dementia research. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2019 
Provided To Others? Yes  
Impact Data sharing across sites, the open science methods and a publication pending are outputs related to the validation and recommendations made. The research tool is part of the growing recognition of MEG's potential to transform dementia research, with novel mechanistic insights and trials outcomes, provided that industry-readiness benchmarks can be met. 
URL http://www.neurodegenerationresearch.eu/initiatives/annual-calls-for-proposals/closed-calls/brain-im...
 
Title CRISPR gene editing 
Description We have been able to establish CRISPR/Cas9 gene editing in our lab as a result of this project 
Type Of Material Technology assay or reagent 
Year Produced 2015 
Provided To Others? Yes  
Impact We have been able to perform gene editing in iPSC lines. 
 
Title DPUK Data Portal 
Description The DPUK Data Portal has been relaunched to include a seamless transition from the DPUK main welcome site into the research infrastructure. The Portal, hosted by Swansea University, now includes openly available metadata on the DPUK cohorts, as well as information on the various parts of the infrastructure, which include: Portal analysis environment powered by virtual desktop infrastructure, imaging platform powered by XNAT, genetic platform created by Digital Health Labs, data linkage possibilities using world-leading matching technology, and a new and easy-to-use application form for researchers to apply for access to data, based on categorised dementia-specific data ontologies. The Portal is now supporting data access applications with dedicated resource to manage this process, and data management based on consultation with other data consortia and the cohorts themselves is underway using novel data management infrastructure (research data appliance based at Swansea University), enabling governance to remain entirely with the data provider and data access permissions to be managed by a central facility. 
Type Of Material Improvements to research infrastructure 
Year Produced 2017 
Provided To Others? Yes  
Impact The relaunch of the Portal has seen a surge in scientific collaboration in DPUK - for the period November 2017-January 2018, there are 12 live studies on the Portal, all using multiple cohorts and all cross-institution, including internationally-led studies from Maastricht University and the University of Hong Kong. These studies have primarily phenotypic data as their main modality, however we are also seeing the combination of phenotypic, genotypic and imaging data in studies, thus showing the power of a central system for accessing and analysing data from previously disparate sources. Genetics and imaging work packages are also contributing to the studies being supported by DPUK, and the Portal is making data available to specialists in these areas in order for them to derive services for the epidemiological community to make use of data that was previously unobtainable, either due to access difficulties or specialist intervention being necessary. 
URL https://portal.dementiasplatform.uk/
 
Title DPUK Data Portal Datathon Virtual Desktop 
Description Bespoke virtual desktop infrastructure for DPUK Datathons - comprising of dedicated 32GB RAM/4 CPU machines supporting up to 60 concurrent users. Pre-loaded with software such as Stata 16, SPSS, SAS, R, Python (Anaconda), PyCharm, Spyder, Jupyter Notebook, Eclipse, SQL Server Management Studio, Matlab, and Office. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact The dedicated Datathon desktop has allowed us to run 4 DPUK Datathon events across the UK, which have had an international audience of over 150 researchers cumulatively. 
URL https://portal.dementiasplatform.uk/
 
Title DPUK Imaging Network- Harmonising of Imaging protocols 
Description One important aspect of the work of the DPUK Imaging Network is the harmonising and optimising of protocols for image data acquisition, reconstruction, and analysis. This is currently in progress. There is a dedicated website for the MR/PET Partnership, a sub-group within the Imaging Network. The harmonised protocols will appear here once available: https://www.dpuk-mripet.info/ 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? Yes  
Impact Complete harmonisation has yet to be achieved but this should happen in the first half of 2019. 
 
Title DPUK Stem Cell Network iPSC directory resource for researchers 
Description Members of the DPUK Stem Cell Network have produced a directory listing over 100 iPSC lines that could be made available to researchers in collaboration with the labs who generated the lines. The directory can be found on the DPUK website. It is available via the DPUK website and contact being made with the lead researcher who generated the lines. 
Type Of Material Cell line 
Year Produced 2018 
Provided To Others? Yes  
Impact The Stem Cell Network has published a range of papers using the resource. For an illustrative example please see a recent 2019 paper from the laboratory of Professor Richard Wade- Martins, the lead of the Stem Cell Network. https://academic.oup.com/hmg/advance-article/doi/10.1093/hmg/ddz038/5315478 
URL https://www.dementiasplatform.uk/for-researchers/expert-communities-1/stem-cells-network-1/ipsc-reso...
 
Title Dementia Diagnosis Algorithm for use in primary care, hospital admissions or mortality datasets 
Description The researchers from DPUK WP9 used data from ~17,000 UK Biobank participants to identify participants with one or more dementia codes in primary care, hospital admissions or mortality datasets, and compared the coded data to the full-text medical record. Having validated the accuracy of these datasets, they then developed algorithms that can be applied to identify participants with dementia in UK Biobank and other DPUK cohorts. The authors will continue this promising work by investigating sources of potential bias in the data and the generalisability of these findings to older ages and other geographical areas. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2019 
Provided To Others? Yes  
Impact This is an initial validation study which has proved that the methodology works. Following recent publication of the results (March 2019) the work will be expanded and the findings built-on. 
 
Title Dementias Platform UK: Cognitive Test Directory. 
Description Dementias Platform UK: Cognitive Test Directory. Oxford, UK: DPUK; 2019. for use on the DPUK Data Portal 
Type Of Material Improvements to research infrastructure 
Year Produced 2019 
Provided To Others? Yes  
Impact Calvin C, et al. Dementias Platform UK: Cognitive Test Directory. Oxford, UK: DPUK; 2019. Downloadable from: https://www.dementiasplatform.uk/for researchers/get-ahead-with-cognitive-test-data-1/cognitive-test-directory 
URL https://www.dementiasplatform.uk/for%20researchers/get-ahead-with-cognitive-test-data-1/cognitive-te...
 
Title Development of an enhanced Cognitive Assessment for UK Biobank 
Description A DPUK funded group (WP10) led by Ian Deary in Edinburgh are working closely with UK Biobank to develop an enhanced cognitive assessment, including tests of cognitive function known to be sensitive to ageing. This includes more detailed tests of declarative memory, reasoning and executive function. There are some limitations of the scope for the tests; a brief period of time is allowed for testing to fit with any planned clinical visits for UK Biobank participants and it has to be self-administered on a computer touch screen. The group has produced a report for UK Biobank on the enhanced UK Biobank cognitive assessment and provided their preliminary assessment of the test characteristics. Subject to UK Biobank approval, it is hoped to provide details of the tests on the DPUK website. Preliminary report to UK Biobank is dated 21.09.2017 and is in the process of being updated. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2017 
Provided To Others? Yes  
Impact There has been a revision of the tests administered in UK Biobank and an improvement in their quality. This means that they are now more informative for investigating the variety and subtlety of cognitive changes seem in both healthy and pathological ageing. 
 
Title Dopamine neuron microfluidics 
Description Development of stem cell-derived neuronal culture techniques using microfluidic devices to channel axonal growth. 
Type Of Material Model of mechanisms or symptoms - in vitro 
Provided To Others? No  
Impact Not yet: it is ongoing development 
 
Title Generation of MAPT CRISPR gene edited iPSC lines 
Description We have generated 8 QCed MAPT-­/-­ knockout lines on 2 control backgrounds. 
Type Of Material Cell line 
Year Produced 2018 
Provided To Others? No  
Impact We will use the MAPT-/- iPSC-derived neurons to study the role of MAPT in Parkinson's 
 
Title Generation of SNCA CRISPR gene edited iPSC lines 
Description We have generated 3 QCed SNCA-­/-­ knockout lines on control background and isogenic correction of SNCA Triplication patient line (and also knockout) - clones identified by droplet digital PCR, undergoing confirmatory sequencing. 
Type Of Material Cell line 
Year Produced 2018 
Provided To Others? No  
Impact Generation of SNCA CRISPR gene edited lines will further our work on the role of macrophages and microglia on the uptake/processing/secretion of alpha-­synuclein and its role in stimulating the immune response and enable us to interrogate the mechanism for the phagocytosis defect phenotype observed in the SNCA-­Triplication macrophages/microglia. 
 
Title High content, high throughput analysis 
Description The ability to perform detailed high-throughput analysis of neurons in culture 
Type Of Material Technology assay or reagent 
Year Produced 2016 
Provided To Others? Yes  
Impact Shared use of best practice in high-throughput analysis using Opera Phenix imager and high-throughout plate readers 
 
Title In vitro electrophysiology 
Description Patch-clamp techniques to measure neuronal activity of stem cell-derived neurons 
Type Of Material Technology assay or reagent 
Provided To Others? No  
Impact Analaysis of stem cell-derived neurons: dopamine neurons, cortical neurons, motor neurons and medium spiny neurons 
 
Title Live cell imaging techniques in iPS-derived DA neurons in vitro 
Description We have optimised a live cell imaging protocol for the visualisation and measurement of mitochondrial membrane potential in differentiated neurons. 
Type Of Material Cell line 
Provided To Others? No  
Impact The membrane potential-sensing dye TMRM can be used to quantify membrane potential, with increased fluorescence indicating increased membrane potential. 
 
Title Microglia differentiation 
Description The ability to generate microglia from human stem cells from dementia patients 
Type Of Material Cell line 
Provided To Others? No  
Impact We will be able to compare the function of microglia generated from patients and from controls 
 
Title PLA in stem cell neurons 
Description To enable the detection of a-syn oligomers in stem cell-derived dopamine neurons 
Type Of Material Technology assay or reagent 
Year Produced 2017 
Provided To Others? Yes  
Impact The detection of a-syn oligomers in stem cell-derived dopamine neurons 
 
Title Pipelines for processing MR data 
Description Novel pipelines for processing MR data (in conjunction with DPUK imaging platform) 
Type Of Material Improvements to research infrastructure 
Year Produced 2016 
Provided To Others? Yes  
Impact Establish pipelines to process MR data and combine that data in an imaging platform used by other DPUK cohorts 
 
Title Pipelines for processing PET data from PET/MR 
Description Creation of novel pipelines for processing PET data from PET/MR 
Type Of Material Improvements to research infrastructure 
Provided To Others? No  
Impact These pipelines allow for improved efficiency and accuracy in the processing of PET data that is received from a PET/MR scanner. 
 
Title RNA-Seq 
Description Development of methods for analysis of RNA-Seq 
Type Of Material Technology assay or reagent 
Provided To Others? No  
Impact Understanding of gene expression profiles in selected cell population 
 
Title Target discovery assays 
Description Develop target discovery assays using high throughput screens 
Type Of Material Technology assay or reagent 
Provided To Others? No  
Impact New research facilty built for our work 
 
Title iPSC phenotypic screens 
Description We have developed an organelle calcium flux assay for high-throughput screening and applied the assay to screen 4000 small molecules in Parkinson's patient iPSC-dervied dopamine neurons. 
Type Of Material Technology assay or reagent 
Year Produced 2018 
Provided To Others? No  
Impact We will use the assay to identify new therapeutic targets or novel and or repurposable small molecule therapeutics. 
 
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). 
 
Title C-Surv Ontology 
Description The C-Surv ontology was finalised for the curation of DPUK Cohort Data. The onotology is comprised of 20 top-level and 140 2nd-level categories and all cohort data are categoried according to these. Standardisation of naming structure is an ongoing programme across all cohorts. Also, harmonisation of a 30-variable minimal dementia-focused dataset and updating of the DPUK Data Portal metadata tools, according to the C-Surv ontology. 
Type Of Material Data handling & control 
Year Produced 2019 
Provided To Others? No  
Impact Paper has been written, awaiting submission. The model may be adopted by cohorts and other interested parties as the standard for cohort data curation. 
 
Title Cam-CAN 
Description Cam-CAN project extended to include subarm of "Cam-CAn Frail" and early dementia participants. 
Type Of Material Database/Collection of data 
Year Produced 2016 
Provided To Others? Yes  
Impact Extensive applications for data from CC700; Cam-CAN-Frail still in data acquisition phase. 
 
Title Clinical Studies Register 
Description The Clinical Studies Register is an opt-out database. DPUK manages this database of willing AIRWAVE cohort participants for re-contact in clinical trials. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? Yes  
Impact The Clinical Studies Register holds approximately 50,000 participant records. The success and learnings of the Clinical Studies Register lead to the development of Great Minds, an opt-in register for participants who are willing to undergo deeper and more frequent geno- and phenotyping to add to their cohort records. 
URL https://www.dementiasplatform.uk/our-impact/trails-readiness
 
Title DPUK 7T data sharing 
Description Agreement on data sharing for 7T images using DPUK XNAT platform 
Type Of Material Database/Collection of data 
Year Produced 2016 
Provided To Others? Yes  
Impact pending 
 
Title DPUK Genomics portal 
Description The DPUK Genetics portal provides a collaborative platform for individuals, DPUK cohorts and the wider research community to share and access research outputs from genetic research. The platform provides two key tools for finding, sharing and analysing genetic data; The Results Registry tool, accessible via the main DPUK web portal, allows searching and uploading of genetic results data. This tool provides a rich set of search tools specific to genetic data and includes visualisation using the popular JBrowse genomic browser. This tool will allow users to share this data. This can be done under secure data transfer agreements if necessary. The second tool is the Genetic Data Browser this is available exclusively within the secure DPUK infrastructure. This will allow users to create cross-cohort comparison studies based on genotypic datasets and linked phenotypic data. This tool provides an interactive dashboard which can pull in phenotypic data and genetic markers from GWAS data and allow users to intuitively explore, combine and export patient cohorts. 
Type Of Material Database/Collection of data 
Year Produced 2017 
Provided To Others? Yes  
Impact The DPUK Genetics portal, housed on the DPUK platform, allows non bioinformatic-expert users to explore components of genetic data within a secure environment. We have provided access to an international consortium, GERAD, via the DPUK data portal. This is a dataset of over 18,000 cases and controls (detailed in Table 2), as well as over 5,600 samples to date submitted to the EADB, the European AD DNA bank for deciphering the missing heritability of Alzheimer's disease 
URL https://portal.dementiasplatform.uk/
 
Title DPUK Imaging Platform 
Description Brain scan data from the imaging centres across the UK are brought together in the DPUK imaging platform - a database for anonymised brain scans from the cohort studies. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? Yes  
Impact The DPUK Central XNAT instance allows users to upload, manage and then share their imaging data with the Imaging Hub. The Imaging Hub allows researchers to identify cohorts of images that they wish to access, coordinate the access procedure, and create projects containing approved data for review and analysis. 
 
Title DPUK Re-imaging MRI Database 
Description The database contains MRI scans of brain and body together with self-reported health data from computerised questionnaires. The information follows the latest standard protocol in the UK Biobank imaging sub-study. This database relates to Work Package 3 of the DPUK award, relating to the re-imaging project with UK Biobank. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact The collection of data is ongoing with a target of re-imaging 10,000 subjects from the 100,000 UK Biobank participants in their imaging subs-study. This data collection is was financially (partially) supported from the DPUK award and the protocol to establish the repeat imaging protocol were developed by the DPUK research team. The major impact will come when the full dataset is complete and available to DPUK collaborators for analysis and planning of dementia related trials. The main indirect impact is that UK Biobank are now seeking philanthropic funding to extend on this project and increase repeat imaging numbers to ~70,000. These impacts were made possible by the initial imaging fund awarded to Newcastle, which leveraged a further £8M award from the MRC to UKB for whole repeat body imaging. 
 
Title Early Adversity and Dementia Programme 
Description This is a DPUK research programme for investigating the impact of early adversity on longitudinal cognitive decline and dementia. Lead by Dr Sarah Bauemeister, a team of 4 analysts work on different statistical and machine-learning models, across multiple cohorts and multi-modal data to investigate this topic. 
Type Of Material Computer model/algorithm 
Year Produced 2018 
Provided To Others? No  
Impact One paper submitted to BioRxiv https://www.biorxiv.org/content/10.1101/749077v1 and four pending papers in progress. A DPUK Discovery award and an MRC UK-Korea award were awarded for this programme, and Gates Ventures are funding its continuation through the ADDI interoperability project (scientific use-case). 
 
Title Great Minds 
Description An opt-in database of over 2000 participants from UK-based cohorts who are willing to participate in clinical trials and enhance their phenotyping through eg CANTAB online cognitive tests and Mezurio game as a phone application. Some of these may also under genotyping for greater depth of detail. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? No  
Impact A potential phenotypically rich register of pre-symptomatic healthy people with existing cohort data who are ready to engage with experimental studies to help understanding of dementia. Over three-quarters have engaged with regular online cognitive testing. 
URL https://www.greatmindsfordementia.uk/
 
Title Great Minds CRM recontact platform connects studies with volunteers with specific characteristics 
Description The Great Minds CRM platform is the system by which pseudo-anonymised Great Minds registry data is connected to contact and preference information and allows research assistants to invite identified volunteers with approved studies. 
Type Of Material Data handling & control 
Year Produced 2020 
Provided To Others? No  
Impact The pilot stage has allowed research assistants to securely match a study with volunteers with specific characteristics and manage oversee the engagement - whether the participant agree to join, whether the study claimed the volunteer, whether the study is complete etc. 
 
Title Insight46 XNAT database 
Description A bespoke database has been designed for the collection of Insight46 data that is run on the XNAT platform. 
Type Of Material Database/Collection of data 
Provided To Others? No  
Impact This bespoke database allows for the collection of all study data in one location. Study data can be easily shared with authorised users and raw data can be easily downloaded for analysis. 
 
Title SAIL Dementia eCohort (SAILDeC) 
Description DPUK has funded the creation of the SAIL (Secure Anonymised Information Linkage) Databank Dementia eCohort, known as SAILDeC. A team from the University of Edinburgh, led by Dr Tim Wilkinson and Dr Christian Schnier, have developed a research cohort from routine healthcare records found in the SAIL Databank, a research databank containing routine healthcare and adminstrative records for the Welsh populace. The eCohort is derived from 1.2 million individuals who met the inclusion criteria, and of those, ~130,000 dementia cases throughout the data coverage have been identified. This represents the first UK research-ready disease cohort derived solely from routine healthcare records, which can be analysed in its own right or combined with other rich sources of cohort and routine data. It is thought that the technical components of creating the cohort, in terms of coding and initial analysis, could be the lead for future eCohort generation in other disease fields. These eCohorts could then be analysed within their specific area of science, or combined for a rich multi-morbidity database. 
Type Of Material Database/Collection of data 
Year Produced 2019 
Provided To Others? Yes  
Impact This is the first disease-specific eCohort of patients to be created from ~20 years of routine healthcare data. It provides a rich dementia-specific resource for episodic progression of patients with initial MCI through to mortality, and every stage in between. The process of creating the cohort can inform the creation of such cohorts from the SAIL source and other routine clinical data sources in many disease areas. 
 
Title iPSC resource for researchers 
Description iPSC resources available are listed on DPUK website where they can download iPSC directory provides the opportunity for researchers to formally request over 100 stem cell lines derived from healthy and diseased individuals 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact Valuable way for researchers to find out about available resource 
URL https://www.dementiasplatform.uk/for-researchers/expert-communities-1/stem-cells-network-1/ipsc-reso...
 
Description AMYPAD 
Organisation Amyloid Imaging to Prevent Alzheimer's Disease
Country European Union (EU) 
Sector Public 
PI Contribution JMS is UCL lead for AMYPAD at UCL - which has interdependencies with DPUK through EPAD
Collaborator Contribution Design of protocols
Impact Project recently commenced
Start Year 2016
 
Description ARUK's DEMON network and DPUK Reach partnership 
Organisation Alzheimer's Research UK
Department Alzheimers Research UK, Cambridge
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Dr Sarah Bauermeister sits on ARUK's Deep Dementia Phenotyping ('DEMON') steering group. DEMON is a national network for data science and AI in dementia research - connecting together to work on new analytical solutions for dementia research.
Collaborator Contribution DPUK Reach is a Data Portal and/or ECR online support user group. It supports DEMON's aims by hosting a forum website which allows researchers to discuss cohorts, analyses, codes, statistical approaches, events and more.
Impact DPUK Reach has been launched as a way of DPUK Datathon participants to prepare and carry on for their Data Portal analyses,
Start Year 2019
 
Description ASAP SynTau: Alignment and Standardization of Neuroimaging Methods in Atypical Parkinsonism, specifically Synucleinopathies and Tauopathie 
Organisation EU Joint Programme - Neurodegenerative Disease Research (JPND)
Country European Union (EU) 
Sector Public 
PI Contribution This Working Group brings together neuroimaging experts from all over the world to develop a broad, community-based consensus on imaging protocols. These outcomes will help pave the way for the integration of neuroimaging in large and longitudinal multi-centre studies in AP, including therapeutic trials. Meetings, harmonisation of imaging data, workshops, and later data sharing.
Collaborator Contribution Meetings, harmonisation of imaging data, workshops, and later data sharing.
Impact A project initiation report is submitted to JPND. Data sharing agreements are in progress.
Start Year 2016
 
Description Abeta functional assays 
Organisation University of Oxford
Department Department of Psychiatry
Country United Kingdom 
Sector Academic/University 
PI Contribution We have worked to develop improved in vitro analysis odf Abeta function
Collaborator Contribution Collaborative development of assay
Impact Ongoing collaboration
Start Year 2015
 
Description Alan Turing Institute Datathon - a collaboration between ATI, Deep and Frequent Phenotyping and DPUK 
Organisation Alan Turing Institute
Country United Kingdom 
Sector Academic/University 
PI Contribution Data scientists from many different backgrounds combined their expertise to take on dementia in an unusual format for disease research: a three-day datathon. The intensive research event saw teams come together to work on data that is now available in the DPUK Data Portal. The datathon was jointly organised by DPUK, the Deep and Frequent Phenotyping (DFP) study, and the Alan Turing Institute. The DFP pilot study provided the data and the DPUK Data Portal was the means to work with it. Professor Terry Lyons (UOXF Department of Mathematics) is a leading mathematician with innovative contributions to the analysis of multimodal streamed data and methods that have been applied successfully in mental health contexts. He is also a Turing Fellow. With Dr Andrey Kormilitzin (UOXF), he helped to bring the event to fruition.
Collaborator Contribution The Alan Turing Institute hosted and organised the event, and, as the national institute for data science in the UK, was an ideal partner to bring big data specialists to the great challenges in dementia research. Working with the Alan Turing Institute helped to emphasise one of DPUK's core areas of focus: dementia is not just a challenge that psychiatrists or cognitive neuroscientists can solve alone. Data scientists have a hugely important role to play now that we have the data and the DPUK technology available.
Impact The datathon attracted analysts of all stripes, many of whom had not worked with dementia cohort datasets before. Most of the participants were genuinely excited about the data, datathon and the presentations. We are planning on follow up events, perhaps more focussed on each data type at a time. We're hoping to create a community of experts in these particular data and applications of innovative data science methods for Alzheimer's research. This project brings together several modes of information for people with dementia and will likely play a critical role in understanding how to contrast and compare the different perspectives provided by different types of data.
Start Year 2018
 
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 BioFIND - JPND 
Organisation EU Joint Programme - Neurodegenerative Disease Research (JPND)
Country European Union (EU) 
Sector Public 
PI Contribution We led the JPND award on the use of MEG in harmonisation and standarisation for Dementia research, bringing together Pharma and Academic partners from ten sites.
Collaborator Contribution Expertise, knowledge sharing, and scoping of future project needs.
Impact A project initiation report is submitted. A new data sharing project has begun across six sites.
Start Year 2016
 
Description Cambridge 7T consortium 
Organisation Medical Research Council (MRC)
Department MRC Cognition and Brain Sciences Unit
Country United Kingdom 
Sector Academic/University 
PI Contribution Forming the new University-MRC partnership and Cambridge 7T consortium. Full access to new facility for both partners.
Collaborator Contribution Staff allocation for physics support and adjunctive technologies for participant interaction.
Impact Multidisciplinary - dementia, neurology, psychiatry, development and ageing, cognitive neuroscience and physics. New head of 7T department has been recruited.
Start Year 2015
 
Description Collaboration with Eisai AiM Institute 
Organisation 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 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 Cambridge 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution Optimisation of high-content imaging protocols with Opera Phenix imager
Collaborator Contribution The ARUK Stem Cell Research Centre, Cambridge has standardised the use of the Opera Phenix and Nanostring Sprint instruments for QC in iPSC reprogramming and cproduction of cortical neurons. The Phenix is used for high-throughput imaging of pluripotency markers in patient-derived lines that are generated at the centre. The lab has established a method for routine characterisation of cortical neuron productions using the Nanostring digital gene expression platform. This will facilitate harmonisation of protocols between DPUK centres, and within the STEMBANCC consortium. The imaging platform has been used to develop methods for production of human microglia from iPSCs, and to study cell biology in patient iPSC-derived microglia, focussing on TREM2 mutatiosn. In collaboration with Talisman Therapeutics and AstraZeneca, assays have been established to measure protein uptake in cortical neurons by live imaging.
Impact Development of a strong Dementia Stem Cell Network in DPUK
Start Year 2016
 
Description DPUK DSCN 
Organisation Cardiff University
Department School of Biosciences
Country United Kingdom 
Sector Academic/University 
PI Contribution Forming DPUK Dementia Stem Cell Network
Collaborator Contribution Forming DPUK Dementia Stem Cell Network
Impact Collaborations and interactions
Start Year 2015
 
Description DPUK DSCN 
Organisation University College London
Department Medical School
Country United Kingdom 
Sector Academic/University 
PI Contribution Forming DPUK Dementia Stem Cell Network
Collaborator Contribution Forming DPUK Dementia Stem Cell Network
Impact Collaborations and interactions
Start Year 2015
 
Description DPUK DSCN 
Organisation University of Cambridge
Department Gurdon Institute
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Forming DPUK Dementia Stem Cell Network
Collaborator Contribution Forming DPUK Dementia Stem Cell Network
Impact Collaborations and interactions
Start Year 2015
 
Description DPUK DSCN 
Organisation University of Edinburgh
Department MRC Centre for Regenerative Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution Forming DPUK Dementia Stem Cell Network
Collaborator Contribution Forming DPUK Dementia Stem Cell Network
Impact Collaborations and interactions
Start Year 2015
 
Description DPUK DSCN 
Organisation University of Manchester
Department Manchester Medical School
Country United Kingdom 
Sector Academic/University 
PI Contribution Forming DPUK Dementia Stem Cell Network
Collaborator Contribution Forming DPUK Dementia Stem Cell Network
Impact Collaborations and interactions
Start Year 2015
 
Description DPUK Data Discovery Tools Categorisation and Coding Programme 
Organisation University of Oxford
Department Department of Psychiatry
Country United Kingdom 
Sector Academic/University 
PI Contribution Provide data from our cohort
Collaborator Contribution Create Data discovery tool
Impact Still ongoing
Start Year 2018
 
Description DPUK Imaging Consortium 
Organisation MRC Dementias Platform UK
Country United Kingdom 
Sector Academic/University 
PI Contribution Sharing of Imaging protocols and data management structures
Collaborator Contribution N/A
Impact Project recently commenced
Start Year 2016
 
Description DPUK Tau Partnership 
Organisation Life Molecular Imaging
Country Germany 
Sector Private 
PI Contribution The partnership involves the use of a novel PET tracer (PI2620) developed by Life Molecular Imaging to carry out Tau PET imaging in existing DPUK cohorts (specifically, the PREVENT AD cohort and the AMYPAD PNHS cohort)
Collaborator Contribution LMI (part of the Alliance Medical Group) brings industry expertise in molecular imaging of degenerative brain disease to the Tau-PET study. This study will benefit from a key investigational compound used for PET imaging which is being developed by LMI.
Impact Collaboration between industry and DPUK (Neurology, Radiology, Nuclear MedicineEpidemiology, Psychiatry).
Start Year 2019
 
Description DPUK industry partnership 
Organisation Araclon Biotech
Country Spain 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DPUK industry partnership 
Organisation AstraZeneca
Department AZ Medimmune
Country United Kingdom 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DPUK industry partnership 
Organisation GlaxoSmithKline (GSK)
Department Neurology and GI Centre of Excellence for Drug Discovery (CEDD) GSK
Country United Kingdom 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DPUK industry partnership 
Organisation Ixico
Country United Kingdom 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DPUK industry partnership 
Organisation Janssen Research & Development
Country Global 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DPUK industry partnership 
Organisation SomaLogic
Country United States 
Sector Private 
PI Contribution The Dementias Platform UK provides a research infrastructure for developing new treatments for dementia
Collaborator Contribution Expertise and technologies
Impact Please refer to the following link: http://brain.oxfordjournals.org/content/138/12/3673
Start Year 2014
 
Description DSG (Data Study Group) Network 
Organisation Alan Turing Institute
Country United Kingdom 
Sector Academic/University 
PI Contribution A joint collaboration with the Turing Institue for using the DPUK Data Portal for Workshop - Machine learning - Data Portal infrastructure across DPUK population cohorts.
Collaborator Contribution Provision of the data workshop infrastructure - DPUK Data Portal and joint hosting of workshop
Impact Newly active March 2019
Start Year 2019
 
Description DSG (Data Study Group) Network 
Organisation University of Cambridge
Country United Kingdom 
Sector Academic/University 
PI Contribution A joint collaboration with the Turing Institue for using the DPUK Data Portal for Workshop - Machine learning - Data Portal infrastructure across DPUK population cohorts.
Collaborator Contribution Provision of the data workshop infrastructure - DPUK Data Portal and joint hosting of workshop
Impact Newly active March 2019
Start Year 2019
 
Description Dementias Platform Europe - a collaboration between EMIF-AD and DPUK 
Organisation European Medical Information Framework (EMIF)
Country European Union (EU) 
Sector Charity/Non Profit 
PI Contribution John Gallacher and consultant Prof Derek Hill (advisor to the DPUK1 Executive Team) met with Prof PJ Visser (PI of EMIF) to investigate the possibility of a merger of the two platforms' data and technology, with the support from industry.
Collaborator Contribution Prof Visser hosted the 2-day visit in Amsterdam, providing a tour and in-depth analysis of the runnings and technical features of the EMIF platform.
Impact Prof Derek Hill provided a written report to internal DPUK colleagues on the potential strengths and challenges of merging with EMIF. Industry partners have shown interest in supporting the scheme with funding, with further meetings due to happen in February 2020 to move the initiative forward.
Start Year 2019
 
Description Dementias Platform UK Stem Cell Partnership 
Organisation MRC Dementias Platform UK
Country United Kingdom 
Sector Academic/University 
PI Contribution OPDC will share expertise and stem cell lines as part of DPUK Stem Cell Network
Collaborator Contribution Members will share expertise and stem cell lines as part of DPUK Stem Cell Network
Impact Ongoing
Start Year 2016
 
Description Dementias Platform UK Stem Cell Partnership 
Organisation University of Edinburgh
Country United Kingdom 
Sector Academic/University 
PI Contribution OPDC will share expertise and stem cell lines as part of DPUK Stem Cell Network
Collaborator Contribution Members will share expertise and stem cell lines as part of DPUK Stem Cell Network
Impact Ongoing
Start Year 2016
 
Description Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease 
Organisation McGill University
Department Montreal Neurological Institute and Hospital
Country Canada 
Sector Hospitals 
PI Contribution Laura Parkkinen and team will analyze CSF samples
Collaborator Contribution Dr Brit Mollenhauer (University of Gottingen); Dr Alex Iranzo (University of Barcelona); Dr Bradley Boeve, (NIH); Dr Ronald Postuma (McGill University); Dr Elena Antelmi (University of Bologna) who all provide us with CSF samples from longitudinally followed RBD patients.
Impact We have received a 2-year project grant entitled "Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease" from PD UK starting from 1st February 2019
Start Year 2018
 
Description Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease 
Organisation National Institutes of Health (NIH)
Country United States 
Sector Public 
PI Contribution Laura Parkkinen and team will analyze CSF samples
Collaborator Contribution Dr Brit Mollenhauer (University of Gottingen); Dr Alex Iranzo (University of Barcelona); Dr Bradley Boeve, (NIH); Dr Ronald Postuma (McGill University); Dr Elena Antelmi (University of Bologna) who all provide us with CSF samples from longitudinally followed RBD patients.
Impact We have received a 2-year project grant entitled "Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease" from PD UK starting from 1st February 2019
Start Year 2018
 
Description Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease 
Organisation University of Barcelona
Country Spain 
Sector Academic/University 
PI Contribution Laura Parkkinen and team will analyze CSF samples
Collaborator Contribution Dr Brit Mollenhauer (University of Gottingen); Dr Alex Iranzo (University of Barcelona); Dr Bradley Boeve, (NIH); Dr Ronald Postuma (McGill University); Dr Elena Antelmi (University of Bologna) who all provide us with CSF samples from longitudinally followed RBD patients.
Impact We have received a 2-year project grant entitled "Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease" from PD UK starting from 1st February 2019
Start Year 2018
 
Description Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease 
Organisation University of Bologna
Department Department of Neurologial Sciences
Country Italy 
Sector Academic/University 
PI Contribution Laura Parkkinen and team will analyze CSF samples
Collaborator Contribution Dr Brit Mollenhauer (University of Gottingen); Dr Alex Iranzo (University of Barcelona); Dr Bradley Boeve, (NIH); Dr Ronald Postuma (McGill University); Dr Elena Antelmi (University of Bologna) who all provide us with CSF samples from longitudinally followed RBD patients.
Impact We have received a 2-year project grant entitled "Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease" from PD UK starting from 1st February 2019
Start Year 2018
 
Description Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease 
Organisation University of Göttingen
Country Germany 
Sector Academic/University 
PI Contribution Laura Parkkinen and team will analyze CSF samples
Collaborator Contribution Dr Brit Mollenhauer (University of Gottingen); Dr Alex Iranzo (University of Barcelona); Dr Bradley Boeve, (NIH); Dr Ronald Postuma (McGill University); Dr Elena Antelmi (University of Bologna) who all provide us with CSF samples from longitudinally followed RBD patients.
Impact We have received a 2-year project grant entitled "Development of alpha-synuclein seeding assay as an early, progression and stratifying biomarker for Parkinson's disease" from PD UK starting from 1st February 2019
Start Year 2018
 
Description ETH Zurich - Oxford collaboration for functional imaging in a rodent model of Parkinson's disease 
Organisation ETH Zurich
Country Switzerland 
Sector Academic/University 
PI Contribution Richard Wade-Martin's lab has engineered the rodent model of Parkinson's disease (human SCA overexpression). This model has been characterized with histology, voltammetry of dopamine release in cell culture, and behaviourally. In collaboration with the Zurich group, Johannes Klein has performed data analysis on the imaging provided by ETH Zurich.
Collaborator Contribution Oxford does not currently have the ability to perform high-quality resting state MRI in small animals. Our collaboration partners at ETH of acquired the imaging data, performed pre-processing with motion correction and ICA data cleaning. Together, we have analysed differences in brain networks between mice overexpressing human alpha-synuclein, and alpha-synuclein knockout siblings.
Impact The research is ongoing. The imaging data will be published in the coming year.
Start Year 2015
 
Description Enhancing autophagy flux in Parkinson's disease 
Organisation AstraZeneca
Department Astra Zeneca
Country United States 
Sector Private 
PI Contribution OPDC test drug like molecules in cellular models of Parkinson's
Collaborator Contribution Astra Zeneca to provide drug-like small molecules.
Impact Ongoing
Start Year 2016
 
Description European Prevention of Alzheimers disease project (EPAD) 
Organisation University of Edinburgh
Country United Kingdom 
Sector Academic/University 
PI Contribution DPUK is contributing towards the trials infrastructure and recruitment tot he EPAD longitudinal cohort study
Collaborator Contribution European colleagues are also contributing towards the trials infrastructure and recruitment tot he EPAD longitudinal cohort study
Impact Multi-disciplinary: clinicians, imagers, geneticists, statisticians, epidemiologists.
Start Year 2016
 
Description Evaluation of selected CSF proteins as prognostic markers of dementia in patients with Parkinson's disease 
Organisation Oxford University Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Academic/University 
PI Contribution Provision of samples from our cohort
Collaborator Contribution Measuring two serum proteins (haptoglobin and homocysteine), as well as two cerebrospinal fluid proteins (Aß1-42 and phospho-tau).
Impact Ongoing research
Start Year 2016
 
Description Free living walking behaviour in a cohort of people with RBD 
Organisation Newcastle University
Department Institute of Neuroscience
Country United Kingdom 
Sector Academic/University 
PI Contribution applying the Axivity Device to RBD and Control participants attending Discovery clinic and providing clinical data
Collaborator Contribution Further analysis of data to look for evidence of the onset of motor-symptoms.
Impact Ongoing research
Start Year 2016
 
Description GENFI study - multi centre study 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution NA
Collaborator Contribution NA
Impact NA
Start Year 2016
 
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 Gothenberg CSF projects 
Organisation University of Gothenburg
Country Sweden 
Sector Academic/University 
PI Contribution Sharing of samples
Collaborator Contribution Assays
Impact A number of papers and also training of laboratory staff
Start Year 2012
 
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 Insight 46 
Organisation Medical Research Council (MRC)
Department MRC Cognition and Brain Sciences Unit
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaborating with colleagues at the UCL MRC National Survey for Health and Development, Institute of Molecular Neuroscience, and Institute of Nuclear Medicine, Insight 46 is a major prospective two-time point (0, 12m) MRI, amyloid PET, clinical, biomarker and neuropsychological study of 500 members of the MRC National Survey for Health and Development 1946 birth cohort. This highly inter-disciplinary study involving UCL based epidemiologists, neurologists, imagers, clinical chemists, geneticists and statisticians aims to determine the earliest biomarker changes of AD, the contribution of genetic and life course influences on the development of late life cognitive impairment, and the optimal means of designing AD prevention studies. This >£5M project includes funding from ARUK, MRC Dementias Platform UK (WP4), Wolfson Foundation and Brain Research Trust, as well as industry contributions (~£850K, Eli Lilly). As well as coordinating the project (with Fox, Richards) I supervise a study manager, two clinical PhD students (Lane and Parker, a Wellcome Training Fellowship), and a study coordinator. The study is well underway, with >300 scaned; cross-sectional data will complete in October 2017; and longitudinal collection two years later.
Collaborator Contribution N/A
Impact N/A
Start Year 2014
 
Description JPND EUFIND - European Ultrahigh Field Imaging Biomarkers for Dementia 
Organisation EU Joint Programme - Neurodegenerative Disease Research (JPND)
Country European Union (EU) 
Sector Public 
PI Contribution An international consortium for harmonisation and standardisation of UHF-MRI for Dementia Research. We have contributed expertise, data, and engaged in a pilot study for feasibility and methods development
Collaborator Contribution An international consortium for harmonisation and standardisation of UHF-MRI for Dementia Research. Our partners from 20 EU sites have contributed expertise, data, and engaged in a pilot study for feasibility and methods development
Impact A project initiation report is submitted to JPND
Start Year 2016
 
Description Janssen NV Funding Uplift 2018/19 
Organisation Johnson & Johnson
Department Janssen Pharmaceutica
Country Global 
Sector Private 
PI Contribution DPUK Oxford provide project management and financial management for projects supported as part of this partnership
Collaborator Contribution As well as supporting the project through financial contributions Janssen are actively involved in collaborative research associated with DPUK projects.
Impact Publications arising will be reported by project leads
Start Year 2014
 
Description Lysosomal dysfunction and glycosphingolipid dysregulation in Parkinson's 
Organisation University of Oxford
Department Department of Pharmacology
Country United Kingdom 
Sector Academic/University 
PI Contribution We have provided serum samples from our cohort
Collaborator Contribution analyse serum/plasma and CSF from PD patients, at-­risk patients and control cases as our aims are to characterise the pattern of expression of GSLs in PD and to search for lipid biomarkers
Impact Ongoing research
Start Year 2016
 
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 Misplaced in space 
Organisation University of East Anglia
Country United Kingdom 
Sector Academic/University 
PI Contribution Development of PE concept, and data sharing.
Collaborator Contribution Artistic development of a Dementia outreach exhibition
Impact Exhibition in 2017 at the University of East Anglia
Start Year 2016
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation Alzheimer's Research UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation AstraZeneca
Department Astra Zeneca
Country United States 
Sector Private 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation Eli Lilly & Company Ltd
Country United Kingdom 
Sector Private 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation Johnson & Johnson
Department Janssen Pharmaceuticals
Country United States 
Sector Private 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation Oxford University Hospitals NHS Foundation Trust
Country United Kingdom 
Sector Academic/University 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description NTAD new therapeutics in Alzheimer's disease 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution DPUK EM theme
Collaborator Contribution New biomarker platform for dementia - Cambridge, Oxford, Janssen, JnJ, Lilly, AZ, ARUK and DPUK -
Impact Annual workshop
Start Year 2017
 
Description Neurochip Task Force Genetics Study 
Organisation German Centre for Neurodegenerative Diseases
Country Germany 
Sector Public 
PI Contribution All study members to genotype their cohort on same chip
Collaborator Contribution Sharing genomic data between cohorts with OPDC and Centre PD
Impact Still active
Start Year 2018
 
Description Neurochip Task Force Genetics Study 
Organisation University of Luxembourg
Department Faculty of Science, Technology and Communication
Country Luxembourg 
Sector Academic/University 
PI Contribution All study members to genotype their cohort on same chip
Collaborator Contribution Sharing genomic data between cohorts with OPDC and Centre PD
Impact Still active
Start Year 2018
 
Description ODDI Phenotypic drug discovery in Parkinson's 
Organisation University of Oxford
Department Alzheimer's Research UK Oxford Drug Discovery Institute
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Collaborative drug discovery project in Parkinson's
Collaborator Contribution Collaborative drug discovery project in Parkinson's
Impact Ongoing
Start Year 2017
 
Description Oxford collaboration for molecular imaging (PET) in a rodent model of Parkinson's disease. 
Organisation University of Oxford
Department Department of Oncology
Country United Kingdom 
Sector Academic/University 
PI Contribution Richard Wade-Martins' lab has engineered rodent models of Parkinson's disease: LRRK2 BAC transgenic rats expressing human wild-type, G2019S, or R1441C LRRK2 mutations. These models have been extensively characterised using behavioural tests, voltammetry, electrophysiological recordings and immunohistochemistry analyses, showing that transgenic rats aged 18-21 months bearing any of the LRRK2 mutations exhibit L-DOPA responsive motor dysfunction, impaired striatal dopamine release, and cognitive deficits, but with no apparent neurodegeneration or protein accumulation on histology. In collaboration with the Imaging Core at the Oncology Department, we have optimised a scanning protocol for the aged rat-cohorts that will allow the acquisition of 18F-DOPA PET data to further characterise the effect of these mutations on dopamine metabolism, and validate these rodent models for future imaging studies. The aim is to provide early imaging readouts for the response to therapy with candidate compounds in an animal model of the early stages of PD.
Collaborator Contribution This collaboration allows us to bring new methods to OPDC. Our collaborators provide the radiotracers needed to perform our molecular imaging studies (fluorodopa is not routinely produced or distributed), and the facilities and expertise to run our scans. Veronique Gouverneur's lab has pioneered a new synthesis route for fluorodopa, and they are currently working to scale it up to production level for us. Sean Smart and Veerle Kersemans run the PET facility at the Oncology Department and have optimised the imaging logistics, and helped with acquisition protocols and data reconstruction so we are able to scan our aging cohorts in time.
Impact Initial pilot studies have been performed to detect and address imaging-specific problems before starting the analysis of the transgenic cohorts. The dose and injection timing of aromatic amino acid decarboxylase (AADC) and catechol-O-methyltransferase (COMT) inhibitors (benserazide and entacapone respectively), have been optimised to avoid fluorodopa metabolism outside the brain. The dose of radiotracer and scanning timings are currently under investigation with further pilot scans. We will start imaging the transgenic cohorts at the beginning of 2018, and we anticipate to complete data acquisition and analysis by the end of the year. With the outputs generated from this research, we will be able to apply for further funding to advance our use of molecular imaging for model characterisation and, in the future, for studies evaluating promising candidate compounds to modify disease progression.
Start Year 2016
 
Description Oxford collaboration for molecular imaging (PET) in a rodent model of Parkinson's disease. 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution Richard Wade-Martins' lab has engineered rodent models of Parkinson's disease: LRRK2 BAC transgenic rats expressing human wild-type, G2019S, or R1441C LRRK2 mutations. These models have been extensively characterised using behavioural tests, voltammetry, electrophysiological recordings and immunohistochemistry analyses, showing that transgenic rats aged 18-21 months bearing any of the LRRK2 mutations exhibit L-DOPA responsive motor dysfunction, impaired striatal dopamine release, and cognitive deficits, but with no apparent neurodegeneration or protein accumulation on histology. In collaboration with the Imaging Core at the Oncology Department, we have optimised a scanning protocol for the aged rat-cohorts that will allow the acquisition of 18F-DOPA PET data to further characterise the effect of these mutations on dopamine metabolism, and validate these rodent models for future imaging studies. The aim is to provide early imaging readouts for the response to therapy with candidate compounds in an animal model of the early stages of PD.
Collaborator Contribution This collaboration allows us to bring new methods to OPDC. Our collaborators provide the radiotracers needed to perform our molecular imaging studies (fluorodopa is not routinely produced or distributed), and the facilities and expertise to run our scans. Veronique Gouverneur's lab has pioneered a new synthesis route for fluorodopa, and they are currently working to scale it up to production level for us. Sean Smart and Veerle Kersemans run the PET facility at the Oncology Department and have optimised the imaging logistics, and helped with acquisition protocols and data reconstruction so we are able to scan our aging cohorts in time.
Impact Initial pilot studies have been performed to detect and address imaging-specific problems before starting the analysis of the transgenic cohorts. The dose and injection timing of aromatic amino acid decarboxylase (AADC) and catechol-O-methyltransferase (COMT) inhibitors (benserazide and entacapone respectively), have been optimised to avoid fluorodopa metabolism outside the brain. The dose of radiotracer and scanning timings are currently under investigation with further pilot scans. We will start imaging the transgenic cohorts at the beginning of 2018, and we anticipate to complete data acquisition and analysis by the end of the year. With the outputs generated from this research, we will be able to apply for further funding to advance our use of molecular imaging for model characterisation and, in the future, for studies evaluating promising candidate compounds to modify disease progression.
Start Year 2016
 
Description PROTECT / CHARIOT-Pro / Cardiff DPUK 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Genotyping of 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be completed by Cardiff Univ as part of a collaboration funded by Dementias Platform UK. Polygenic risk scores will be calculated for these individuals and data made available via DPUK Platform.
Collaborator Contribution DNA samples from 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be sent to Cardiff Univ for genotyping
Impact None to date - work in progress. Collaboration is multi-disciplinary - Neurology, Neuroepidemiology & Ageing; Genetics & Genomics; Psychiatry
Start Year 2018
 
Description PROTECT / CHARIOT-Pro / Cardiff DPUK 
Organisation King's College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Genotyping of 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be completed by Cardiff Univ as part of a collaboration funded by Dementias Platform UK. Polygenic risk scores will be calculated for these individuals and data made available via DPUK Platform.
Collaborator Contribution DNA samples from 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be sent to Cardiff Univ for genotyping
Impact None to date - work in progress. Collaboration is multi-disciplinary - Neurology, Neuroepidemiology & Ageing; Genetics & Genomics; Psychiatry
Start Year 2018
 
Description PROTECT / CHARIOT-Pro / Cardiff DPUK 
Organisation University of Exeter
Country United Kingdom 
Sector Academic/University 
PI Contribution Genotyping of 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be completed by Cardiff Univ as part of a collaboration funded by Dementias Platform UK. Polygenic risk scores will be calculated for these individuals and data made available via DPUK Platform.
Collaborator Contribution DNA samples from 1,000 research participants from the PROTECT (KCL & Exeter) and CHARIOT - Pro (Imperial) research studies will be sent to Cardiff Univ for genotyping
Impact None to date - work in progress. Collaboration is multi-disciplinary - Neurology, Neuroepidemiology & Ageing; Genetics & Genomics; Psychiatry
Start Year 2018
 
Description PSP network 
Organisation Cardiff University
Country United Kingdom 
Sector Academic/University 
PI Contribution A new netwrok to coordinate clinical and genetic and imaging research of this severe neurodegenerative disorder
Collaborator Contribution 1. coordinated recruitment 2. biomarker development
Impact PPI acivities; Papers pending;
Start Year 2015
 
Description PSP network 
Organisation Progressive Supranuclear Palsy Association (PSPA)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution A new netwrok to coordinate clinical and genetic and imaging research of this severe neurodegenerative disorder
Collaborator Contribution 1. coordinated recruitment 2. biomarker development
Impact PPI acivities; Papers pending;
Start Year 2015
 
Description PSP network 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution A new netwrok to coordinate clinical and genetic and imaging research of this severe neurodegenerative disorder
Collaborator Contribution 1. coordinated recruitment 2. biomarker development
Impact PPI acivities; Papers pending;
Start Year 2015
 
Description PSP network 
Organisation University of Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution A new netwrok to coordinate clinical and genetic and imaging research of this severe neurodegenerative disorder
Collaborator Contribution 1. coordinated recruitment 2. biomarker development
Impact PPI acivities; Papers pending;
Start Year 2015
 
Description PSP network 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution A new netwrok to coordinate clinical and genetic and imaging research of this severe neurodegenerative disorder
Collaborator Contribution 1. coordinated recruitment 2. biomarker development
Impact PPI acivities; Papers pending;
Start Year 2015
 
Description R4VAD 
Organisation University of Edinburgh
Country United Kingdom 
Sector Academic/University 
PI Contribution A DPUK meeting Oxford in January 2016 RE: stem cells, models and human studies lead to applications to TSA/BHF/AS Vascular Dementia call resulting in the 3 funded projects, one of them being Human (R4VAD), with Prof Joana Wardlaw leading c£1.2M.
Collaborator Contribution Leadership on the project and academic expertise.
Impact Too early to report significant outputs or outcomes at present.
Start Year 2016
 
Description Rodent fMRI imaging 
Organisation ETH Zurich
Country Switzerland 
Sector Academic/University 
PI Contribution OPDC provides mouse models of Parkinson's
Collaborator Contribution ETH carries out fMRI scanning on mice
Impact Ongoing project
Start Year 2016
 
Description SerCymru Fellowship 
Organisation Government of Wales
Country United Kingdom 
Sector Public 
PI Contribution Supervising a Research Fellow. Project title: Deconvoluting the dementia phenotype using functional genomics and computational approaches
Collaborator Contribution Funding the project
Impact This is a multidisciplinary collaboration between biological sciences and informatics/statistic. We have gained assess to EBI data resources which will be analyzed within the scope of the project.
Start Year 2017
 
Description Structural and functional connectivity in the human basal ganglia in health and disease using high resolution MRI at 7T 
Organisation University of Oxford
Department Nuffield Department of Clinical Neurosciences
Country United Kingdom 
Sector Academic/University 
PI Contribution FMRIB scans and clinical data from our cohort
Collaborator Contribution Investigate in vivo connectivity of human basal ganglia.
Impact Ongoing research
Start Year 2016
 
Description Swansea Datathon - a collaboration between SU, DPUK, Alan Turing Insitute and ARUK 
Organisation Swansea University
Country United Kingdom 
Sector Academic/University 
PI Contribution Direct contributions - DPUK provided £2000 of funding to Swansea University to support the venue and catering arrangements for a three-day datathon, as well as circa £3500 in travel bursaries to ECR attendees. In-kind contributions - DPUK provided the DPUK Data Portal equipment for analysis, technical team support pre-, during and post-event; organisational support (in legal agreements etc) and a Communications team to promote the event widely and regularly keep in touch with attendees. DPUK provided scientific guidance in relation to the host (University of Swansea's) scientific questions that they wanted to answer, based on the cohort data held in the DPUK Data Portal.
Collaborator Contribution Swansea provided scientific leadership and expertise in the questions to be answered in the datathon, as well as equivalent organisational and communications support. With our funding, Exeter sourced a venue and catering. They provided on-ground administrative support on the day, and an important sign-posting role in case of any local queries (eg IT support).
Impact By the end of the three-day event, the near 30 attendees would have broken the back of an innovative analysis which they conceived of and developed in their teams. They will be in a great position to take successful ideas forward to publication stage. They will have gained valuable multi-modal analysis experience working in the Data Portal, with an option to develop their work from the datathon. Swansea University will have gained publicity of their cutting edge work into data science, as well as found a supportive future collaborator and adviser in DPUK. DPUK will have taken a step forward in realising its mission to harness the power of cohort data to fight dementia. DPUK had a real mix of skills and a wide range of experience at this Autumn 2019 DPUK datathon.
Start Year 2019
 
Description Synaptic Health 
Organisation Alzheimer's Research UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation AstraZeneca
Department AZ Medimmune
Country United Kingdom 
Sector Private 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation Cardiff University
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation Eli Lilly & Company Ltd
Country United Kingdom 
Sector Private 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation Janssen Biotech, Inc.
Country United States 
Sector Private 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation King's College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation MRC Dementias Platform UK
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation University of Exeter
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation University of Glasgow
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description Synaptic Health 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution Academic leadership and skills in new Dementia research platform; planning and applying for new funding; several meeting and phone conferences; about to initiate NTAD in Cambridge; planning of NTAD study;
Collaborator Contribution Expertise in translational neuroscience; planning; meetings; application for further funding;
Impact New Therapeutics in Dementia consortium; an interdisciplinary research group of clinicians, cognitive scientists, informatics, pharmaceutical and drug development experts; phase 0 studies for "New Therapeutics in Alzheimer's Disease" and "Deep and Frequent Phenotyping" that are designed to optimise phase II studies of disease modifying therapies and additional opportunities for insights into disease pathogenesis; data collection, analyses and publications still pending;
Start Year 2015
 
Description T cell reactivity to alpha-synuclein 
Organisation Celgene
Country United States 
Sector Private 
PI Contribution Interaction with Celgene scientists on Parkinson's immuniology
Collaborator Contribution Mentorship of early career researcher
Impact New post-doc appointed
Start Year 2019
 
Description The Deep Dementia Phenotyping (DEMON) Network - committee member (SB) and strategic partner (DPUK JG and SB) 
Organisation Alan Turing Institute
Country United Kingdom 
Sector Academic/University 
PI Contribution Knowledge partner and network activities associated with the DPUK Datathons and DPUK Usergroup
Collaborator Contribution Provision of resources at DPUK Datathons
Impact Newly established March 2019
Start Year 2019
 
Description The Deep Dementia Phenotyping (DEMON) Network - committee member (SB) and strategic partner (DPUK JG and SB) 
Organisation University of Exeter
Country United Kingdom 
Sector Academic/University 
PI Contribution Knowledge partner and network activities associated with the DPUK Datathons and DPUK Usergroup
Collaborator Contribution Provision of resources at DPUK Datathons
Impact Newly established March 2019
Start Year 2019
 
Description The genetic background of REM sleep behaviour disorder and its conversion to synucleinopathies. 
Organisation McGill University
Country Canada 
Sector Academic/University 
PI Contribution Providing DNA samples from our cohort
Collaborator Contribution Analsying with 2 plaforms using advanced genetic methods.They have already analysed about 500 RBD patients, 600 PD patients and about 1000 controls, with very encouraging results.
Impact Ongoing research
Start Year 2017
 
Description True Colours Platform Gastroenterology Group 
Organisation University of Oxford
Department Department of Psychiatry
Country United Kingdom 
Sector Academic/University 
PI Contribution Setting up a collaborative project investigating gastroentestinal disease using the Data Portal as a data sharing platform and collaborative analysis space for gastroenterology.
Collaborator Contribution Analytical expertise and Data Management (Data Portal)
Impact Publiciation written, pending submission.
Start Year 2019
 
Description Twinning: Centre PD 
Organisation University of Luxembourg
Department Faculty of Science, Technology and Communication
Country Luxembourg 
Sector Academic/University 
PI Contribution OPDC will share information on clinical cohorts, stem cells and neuropathology
Collaborator Contribution Centre PD will share information on clinical cohorts, stem cells and neuropathology Centre PD worked with us on the EU Twinning grant to facilitate OPDC clinical data base move from Open Clinica to Red Cap System
Impact Ongoing
Start Year 2015
 
Description UK 7T MRI network 
Organisation Cardiff University
Department Brain Research Imaging Centre (CUBRIC)
Country United Kingdom 
Sector Academic/University 
PI Contribution establishing a new 7T imaging network, with new CRI funding and MRC Parntership grant
Collaborator Contribution establishing a new 7T imaging network, with new CRI funding
Impact A series of workshops and symposia, for training, education and research exchange. Topics include 7T-Safety, fMRI, Parallel Transmit and research updates. The project is multi-disciplinary, between clinicians in neurology, psychiatry, radiology and physicists, engineers, and data informaticians.
Start Year 2016
 
Description UK 7T MRI network 
Organisation University of Glasgow
Department Institute of Neuroscience and Psychology
Country United Kingdom 
Sector Academic/University 
PI Contribution establishing a new 7T imaging network, with new CRI funding and MRC Parntership grant
Collaborator Contribution establishing a new 7T imaging network, with new CRI funding
Impact A series of workshops and symposia, for training, education and research exchange. Topics include 7T-Safety, fMRI, Parallel Transmit and research updates. The project is multi-disciplinary, between clinicians in neurology, psychiatry, radiology and physicists, engineers, and data informaticians.
Start Year 2016
 
Description UK 7T MRI network 
Organisation University of Nottingham
Department School of Biomedical Sciences Nottingham
Country United Kingdom 
Sector Academic/University 
PI Contribution establishing a new 7T imaging network, with new CRI funding and MRC Parntership grant
Collaborator Contribution establishing a new 7T imaging network, with new CRI funding
Impact A series of workshops and symposia, for training, education and research exchange. Topics include 7T-Safety, fMRI, Parallel Transmit and research updates. The project is multi-disciplinary, between clinicians in neurology, psychiatry, radiology and physicists, engineers, and data informaticians.
Start Year 2016
 
Description UK 7T MRI network 
Organisation University of Oxford
Department Oxford Centre for Functional MRI of the Brain (FMRIB)
Country United Kingdom 
Sector Academic/University 
PI Contribution establishing a new 7T imaging network, with new CRI funding and MRC Parntership grant
Collaborator Contribution establishing a new 7T imaging network, with new CRI funding
Impact A series of workshops and symposia, for training, education and research exchange. Topics include 7T-Safety, fMRI, Parallel Transmit and research updates. The project is multi-disciplinary, between clinicians in neurology, psychiatry, radiology and physicists, engineers, and data informaticians.
Start Year 2016
 
Description University of East Anglia Datathon - a collaboration between UEA, DPUK, Alan Turing Insitute and ARUK 
Organisation University of East Anglia
Country United Kingdom 
Sector Academic/University 
PI Contribution DPUK provided £2000 of funding to UEA to support the venue and catering arrangements for a three-day datathon. DPUK also provided the DPUK Data Portal equipment for analysis, technical team support pre-, during and post-event; organisational support (in legal agreements etc) and a Communications team to promote the event widely and regularly keep in touch with attendees. DPUK provided scientific guidance in relation to the host (UEA's) scientific questions that they wanted to answer, based on the cohort data held in the DPUK Data Portal.
Collaborator Contribution University of East Anglia provided scientific leadership and expertise in the questions to be answered in the datathon, as well as equivalent organisational and communications support. With our funding, UEA sourced a venue and catering. They provided on-ground administrative support on the day, and an important sign-posting role in case of any local queries (eg IT support). In contrast to other datathons, UEA's event was on a larger scale, and they provided a tour of the grounds and art galleries, jazz entertainment throughout the generous after-workshop dinners as well as accommodation for the majority of attendees.
Impact By the end of the three-day event, the near 60 attendees would have broken the back of an innovative analysis which they conceived of and developed in their teams. They will be in a great position to take successful ideas forward to publication stage. They will have gained valuable multi-modal analysis experience working in the Data Portal, with an option to develop their work from the datathon. The UEA will have gained publicity of their cutting edge work into dementia, as well as found a supportive future collaborator and adviser in DPUK. DPUK will have taken a step forward in realising its mission to harness the power of cohort data to fight dementia.
Start Year 2019
 
Description University of Exeter Datathon - a collaboration between UoE, DPUK, Alan Turing Insitute and ARUK 
Organisation University of Exeter
Country United Kingdom 
Sector Academic/University 
PI Contribution DPUK provided £2000 of funding to the University of Exeter to support the venue and catering arrangements for a three-day datathon. DPUK also provided the DPUK Data Portal equipment for analysis, technical team support pre-, during and post-event; organisational support (in legal agreements etc) and a Communications team to promote the event widely and regularly keep in touch with attendees. DPUK provided scientific guidance in relation to the host (University of Exeter's) scientific questions that they wanted to answer, based on the cohort data held in the DPUK Data Portal.
Collaborator Contribution University of Exeter provided scientific leadership and expertise in the questions to be answered in the datathon, as well as equivalent organisational and communications support. With our funding, Exeter sourced a venue and catering. They provided on-ground administrative support on the day, and an important sign-posting role in case of any local queries (eg IT support).
Impact By the end of the three-day event, the near 30 attendees would have broken the back of an innovative analysis which they conceived of and developed in their teams. They will be in a great position to take successful ideas forward to publication stage. They will have gained valuable multi-modal analysis experience working in the Data Portal, with an option to develop their work from the datathon. The University of Exeter will have gained publicity of their cutting edge work into dementia, as well as found a supportive future collaborator and adviser in DPUK. DPUK will have taken a step forward in realising its mission to harness the power of cohort data to fight dementia.
Start Year 2019
 
Description iLEADS early onset AD mutli centre consortium 
Organisation University of Washington
Country United States 
Sector Academic/University 
PI Contribution NA
Collaborator Contribution NA
Impact NA
Start Year 2019
 
Title Biomarker evaluation of 7T MRI in dementia 
Description evaluation of novel 7T MRI for early detection of pathology in AD, and other dementias, building on the JPND consortium "EUFIND" 
Type Diagnostic Tool - Imaging
Current Stage Of Development Early clinical assessment
Year Development Stage Completed 2020
Development Status Under active development/distribution
Impact stronger links to basic cognitive neurosciences of memory systems, and to multi-centre clinical transnational centres across EU 
 
Title Expert adviser in planning of a Dementia Centre 
Description John was asked as expert to comment on an introductory paper on providing up-market, purpose-built centres to satisfy the increasing demand for treating and caring for all those affected by dementia. The proposed centres are also for the families of sufferers, helping them to cope with the changes in their loved ones, becoming, not just passive carers, but positive forces for minimising rates of decline whilst maximising dignity. 
Type Therapeutic Intervention - Psychological/Behavioural
Current Stage Of Development Initial development
Year Development Stage Completed 2020
Development Status Under active development/distribution
Impact This concept will be further developed with the input of experts like John Gallacher in both care design and treatment with the aim to inform the first Planning Application by Spring 2020. 
 
Title CANTAB remote testing implementation 
Description DPUK's partnership with Cambridge Cognition has lead to their CANTAB software being promoted as an application throughout the platform. 
Type Of Technology Webtool/Application 
Year Produced 2018 
Impact DPUK cohorts are able to request access to CANTAB cognitive testing software to enhance their study. CANTAB software is also used with the Deep and Frequent Phenotyping (DFP, WP16) as part of the phenotyping and the Great Minds database. 
URL https://www.cambridgecognition.com/products/cognitive-research/
 
Title DPUK Data Portal Cohort Explorer 
Description The Cohort Explorer is a tool to conduct exploratory analyses over harmonised data sets. The purpose of the Explorer is to complement the Cohort Matrix and Directory, and gives a visual representation of participant numbers per variable, per cohort, aiding users looking into the eligibility of cohorts they are interested in to shape their potential hypotheses. 
Type Of Technology Webtool/Application 
Year Produced 2018 
Impact It has helped attendees at DPUK datathons to identify interesting cohorts suitable for their research questions. It has provided researchers the ability to quickly assess demographic information of cohorts before applying for cohort study data through the DPUK Data Portal. 
URL https://portal.dementiasplatform.uk/CohortExplorer
 
Title DPUK Reach 
Description The concept for DPUK Reach is to fill the gap in support for researchers accessing the DPUK Data Portal, a lot of researchers are lost following their initial set up but then left to their own devices, many have issues and problems that need resolving and could easily be met by simple peer support rather than costly and time consuming support from the Data Portal team. This will be addressed by using an online forum based approach - DPUK Reach. One of Oxford's DPUK team members is on the working group for DEMON (a network launched by ARUK) and will use their knowledge to support DPUK Reach, and the aim is for both forums will work in collaboration. One of DPUK Data Portal's primary functions is to be a remotely accessed secure analysis environment, with access, pending project application, to large cohort datasets. DPUK Reach will grant enormous research potential to teams of researchers around the world. Having an online area where researchers and ECR's can remotely discuss projects or issues with industry experts and one another, would be invaluable. As science starts to take a modern turn towards online collaborations, more and more digital data is being collected and machine learning and other advanced statistical analysis used. An environment where researchers can brainstorm and receive almost instant advice and support will not only alleviate pressure on the internal DPUK & Data Portal teams, and help to pave the way forward to curing dementia. DPUK Reach will be available to all researchers using the DPUK Data Portal, with a general conversation FAQ area for potential Data Portal users and a restricted area for researchers using the portal, there will also be closed areas that can be used for collaborations such as Datathon participants, to share information about their event and get them collaborating from the outset. All users will need to complete a simple sign in. The DPUK Reach forum will be hosted by Oxford and embedded on the DPUK website and linked from the Data Portal website, a login will be required. Following initial ideas to have Discourse embedded in the Data Portal, DPUK Reach will now use Vanilla Forums hosted by Mythic Beasts on the DPUK website with links from the Data Portal site. Approach DPUK Reach will be a forum embedded within the DPUK website, it will be accessed via registration log in for users, enabling the regulation of users as DPUK Reach will require an agreement to code of conduct. This will enable the forum to be used for the purpose intended and monitoring control. 
Type Of Technology Webtool/Application 
Year Produced 2020 
Impact Aims • To create a single point of reference for researchers to gain support and knowledge not only with technical Data Portal support, user & cohort information but in other relevant areas such as funding, support for grant applications, interviews, big data sets, population cohorts and statistical support. • To create a secure space for collaborative work among researchers. • To set up and run a research focused and informative support community based around DPUK and the Data Portal. Desired outcomes Short term outcomes: • Set up a forum called DPUK Reach via the DPUK website, with links from Data Portal webpages. • DPUK Reach will be set up to contain separate discussion areas which will host conversations moderated by DPUK staff, in their respective fields. • The forum will be branded according to DPUK's strict branding style guide in order to link in seamlessly with the existing DPUK & Data Portal websites. • To be soft launched at the UEA Datathon, following main launch in November 2019, in line with DEMON Network & EDON • To be fully GDPR compliant; but able to contact users for future DPUK opportunities, events or workshops. Longer term outcomes: • A fully public/private facing forum, with the options to sign up as a user depending on user level need: public, researcher, industry, funder, cohort etc. • Multiple rooms and categories for desired topics (to be continually monitored and expanded over time) • The ability to promote and arrange workshops • To expand affiliation with existing research focused user-groups • To have a fully functioning community of researchers, moderated by users overseen by DPUK staff and centralised around the DPUK website. • To grow the number of DPUK Reach users and successful research projects in the Data Portal by promoting at conferences and talks • To support ECR's with guidance in a variety of areas such as grant applications and interviewing techniques. 
URL https://reach.dementiasplatform.uk/entry/signin?Target=categories
 
Title Dementia's Platform UK Biostatistics Tool 
Description Bespoke analysis tool to perform the latest analyses on the largest UK datasets available. 
Type Of Technology Software 
Year Produced 2016 
Impact Product still under development / improvement following user feedback. 
 
Title Dementia's Platform UK Cohort Selection Tool 
Description Used to select cohorts of interest, and to put a research proposal to them for feedback under the DPUK research protocol. 
Type Of Technology Webtool/Application 
Year Produced 2016 
Impact Improvements ongoing to develop impacts. 
URL http://www.dementiasplatform.uk/cohort-tools/
 
Title Dementias Platform UK Data Portal 
Description The DPUK Data Portal is a platform to allow the ingress of data from cohort studies and real-world evidence data from across the UK and internationally. The Portal allows access, subject to data provider approval, to said data via an integrated application system, and provides an analysis environment on remote desktop to allow distributed team science from anywhere in the world. The Portal environment comprises of front end user tools, a virtual desktop infrastructure for data analysis, a security system for permissions management and data upload, and an underlying architecture of substantial storage and applications to support the data needs. 
Type Of Technology Webtool/Application 
Year Produced 2017 
Impact To date (early 2019) we have had ~80 applications for cohort data via our new processes. Of these, 50 have been approved and at least 25 studies are underway with analysis of their approved cohort data. All of these studies are contributing to the dementia research community with a mixture of traditional epidemiological hypotheses, methodology validation, complex machine learning, and statistical modelling all being achieved in the Portal. Website: https://portal.dementiasplatform.uk 
 
Title Great Minds participation selection tool 
Description We have a pilot participation selection tool that allows research assistants to match registry volunteers to approved study characteristics. It helps the Great Minds team manage requests for study volunteers, against participant preferences and potential fatigue from study requests. 
Type Of Technology Webtool/Application 
Year Produced 2020 
Impact The participation tool is at the heart of the process for approving and managing studies interest in volunteers and linking these with potential volunteers. 
 
Title Great Minds study feasibility tool 
Description The pilot feasibility tool allows researchers to check how many Great Minds registry volunteers have characteristics they seek for their study. 
Type Of Technology Webtool/Application 
Year Produced 2020 
Impact The pilot feasibility tool allows remote researchers to conduct an exploratory selection of volunteers based on specific criteria. The purpose of the toois to give a visual representation of participant numbers per variable. 
 
Title Mezurio app 
Description he Mezurio app lets you complete interactive, scientifically valuable measurement tasks. It's designed to be used as part of a research study. It helps you become an even more valuable part of that research by letting you contribute new kinds of data: quickly, frequently, and from the comfort of your own home. To use this app, simply download it, then tap-in the invite code you were given by your research coordinator, or received by email. At the moment it is only possible to use this app if you are part of an approved, ethically reviewed research study. 
Type Of Technology Webtool/Application 
Year Produced 2019 
Impact Ivan Koychev (DPUK Clinician Scientist) has been instrumental in the development and dissemination of the Mezurio app, especially in its use in Great Minds and Deep and Frequent Phenotyping. 
URL https://www.greatmindsfordementia.uk/
 
Title OHBA Software Library development 
Description ongoing development of software library for MEEG data analysis. NTAD has led to the development of additional data preprocessing functionality and pipelines in Matlab 
Type Of Technology Software 
Year Produced 2019 
Impact ongoing development of software library for MEEG data analysis. NTAD has led to the development of additional data preprocessing functionality and pipelines in Matlab 
URL https://ohba-analysis.github.io/osl-docs/
 
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 glmtools python software development 
Description a novel software tool for defining and fitting general linear models on very large datasets in python 
Type Of Technology Software 
Year Produced 2019 
Impact • glmtools python software development - a novel software tool for defining and fitting general linear models on very large datasets in python 
 
Description 26 April 2016, DPUK Annual Conference 
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 DPUK Open Day
Year(s) Of Engagement Activity 2016
URL http://www.dementiasplatform.uk/wp-content/uploads/2016/06/Conference-Programme.pdf
 
Description Organised talk by Cohort Lead at DPUK's host institution, University of Oxford 
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 Postgraduate students
Results and Impact Professor Marcus Richards, professor of Psychology in Epidemiology at UCL, senior researcher in NHSD cohort, and DPUK workpackage lead, delivered a talk at the University of Oxford's Department of Psychiatry.

His talk was entitled 'Life course antecedents of cognitive reserve and dementia risk'

The seminar space was full, with people standing in the back, indicating a keen interest in epidemiology, data science, AD and DPUK's work in facilitating progress in these areas.
Year(s) Of Engagement Activity 2018
 
Description Participation in an activity, workshop or similar - Poster presentation at CTAD conference, Barcelona 24-27th October 2018: Child adversity 
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 Poster presentation: Using the power of Dementias Platform UK (DPUK) cohorts to investigate the longitudinal effects of childhood adversity on adult cognition and health outcomes: Implications for cognitive change & dementia outcomes. Interest and discussion in our research and further work which will involve further cohorts and a publication.
Year(s) Of Engagement Activity 2018
URL http://www.ctad-alzheimer.com/
 
Description "The Funny Side of Parkinson's" 
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 "The Funny Side of Parkinson's" on BBC1. Paul Mayhew-Archer Documentary.
Richard Wade-Martins and Fahd Baig appeared to talk about OPDC.
Paul was named best presenter at the Grierson Awards for this documentary.
Year(s) Of Engagement Activity 2016
URL http://www.bbc.co.uk/iplayer/episode/b072xkcz/inside-out-south-parkinsons-the-funny-side
 
Description #DementiaActionWeek2018 
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 Sharing content to promote #DementiaActionWeek2018 including producing original video of researcher
Year(s) Of Engagement Activity 2018
URL https://twitter.com/WadeMartinsLab/status/999632001920651264
 
Description 11/5/18 - Swansea University HDR UK & NHS Digital Data Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Policymakers/politicians
Results and Impact Discussion to enable mutual understanding
List of areas to explore for improvement & areas for development
Year(s) Of Engagement Activity 2018
 
Description 11th UK-Korea Neuroscience Symposium - Busan, Korea 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact An invited oral presentation of a paper co-authored with John Gallacher describing a DPUK cross-cohort analysis utilising multiple DPUK cohorts. An additional poster was also presented. The research was titled: 'Using the power of Dementias Platform UK (DPUK) cohorts to investigate the effects of childhood adversity on adult behvaioural, physiological, cognitive and dementia outcomes: A cross-cohort investigation'. Questions and further discussions about the analysis and DPUK were initiated as a result of both presentation and network opportunities are to be followed up from these presentations. Furthermore, interest in the DPUK portal was initiated.
Year(s) Of Engagement Activity 2018
URL https://www.ukorea.ac.uk/events/11th-uk-korea-neuroscience-symposium-20th-21st-august-2018-haeundae-...
 
Description 1946 70th birthday event 
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 The 70th Birthday Event celebrated the 70th birthday of participants in the MRC NSHD (1946 birth cohort) - we provided a display of brain imaging
Year(s) Of Engagement Activity 2016
 
Description 2/10/18 - Technology Sector Symposium - Developing a UK Wide Health Data Research Platform 
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 primary aim of the symposium is to brief potential platform partners on the DIH programme and interest them in the opportunity to work with us to develop it. This will be achieved by:
• Informing the technology sector of the aims of the Digital Innovation Hub programme as part of the Industrial Strategy Challenge Fund
• Establishing the mutual benefits to patients, the NHS, researchers and innovators
• Welcoming industry participation in co-development of the research platform
• Defining key requirements for successful delivery of the Digital Innovation Hub platform
• Facilitating collaboration across industry/academia/NHS to support this delivery
Year(s) Of Engagement Activity 2018
 
Description 2017 Research Dementia Research Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Postgraduate students
Results and Impact Talk to present progress and development in the DPUK and how the Platform can create opportunity.
Year(s) Of Engagement Activity 2015,2017
 
Description 2018 article published on iPS research in Oxford in Phenotype (Oxford Biochemical society magazine) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact A decade of IPS cell research in Oxford by Sally Cowley
Phenotype is the magazine of the Oxford University Biochemical Society. It is run by students and staff and published on a termly basis.
Year(s) Of Engagement Activity 2018
URL https://issuu.com/phenotypejournal/docs/mt18
 
Description 2018/19 OPDC Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact We produced a newsletter on OPDC activities.
This was sent to all study participants, those on OPDC news mailing list and will be handed out at events.
Year(s) Of Engagement Activity 2018,2019
URL https://www.opdc.ox.ac.uk/_asset/file/opdc2018-19-newsletter.pdf
 
Description 29-30/5/18 - International Clinical Phenomics Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact International, expert workshop, hosted by UK Biobank, to discuss the challenges of accurate identification and sub-phenotyping of multiple health-related outcomes at scale in large population-based prospective studies.
Year(s) Of Engagement Activity 2018
 
Description 5-7 October 2016, CCNA ISAB (Vancouver)(premanifest disease & cognitive footprint?) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Plenary lecture at Canadian consortium on Neurodegeneration and aging
Year(s) Of Engagement Activity 2016
 
Description 5/9/18 - Design Thinking Workshop 
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 As we develop the blueprint for the platform components of the Digital Innovation Hub programme, a one day design workshop as an opportunity for us to focus on the research experience we would ideally like from this platform. A highly interactive session led by experienced design thinking practitioners.
Year(s) Of Engagement Activity 2018
 
Description 6-7 April 2016, DZNE (Bonn)"The role of genetic cohorts in bridging clinical and basic science" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion of the role of Genetic cohorts to advise the German Neurodegenerative disease research network
Year(s) Of Engagement Activity 2016
 
Description @dementiasuk twitter account 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Our twitter account is used primarily to promote DPUK opportunities (training, funding and resources) amongst the dementia research community, and to engage with current issues in dementia research.
Year(s) Of Engagement Activity 2015,2016,2017,2018
URL https://twitter.com/DementiasUK
 
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 A moving target? Dementia in changing older populations (and a changing world) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact A talk was given at AAIC 2016 (Alzheimer's Association International Conference) 23-28 July at Toronto Canada.
Year(s) Of Engagement Activity 2016
 
Description A population perspective on dementia and its relationship with ageing and dying across time 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited speaker at Brocher foundation, Geneva, 14-15 April 2016. The redefinition of Alzheimer's disease and its social and ethical consequences.
Year(s) Of Engagement Activity 2016
 
Description A public health researcher's reflections on ethics informed consent our directin of travel and population studies of brain ageing 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Schools
Results and Impact Up to date Alzheimer Disease researcher thinking from clinical and biomedical standpoints.
Year(s) Of Engagement Activity 2015
 
Description A talk or presentation - Professor Thompson Robinson 'Rates, Risks and Routes to Reduce Vascular Dementia update' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Professor Thompson Robinson gave a talk on 'Rates, Risks and Routes to Reduce Vascular Dementia' at the South West Peninsula and West England LCRN Meeting on 5th November 2019
Year(s) Of Engagement Activity 2019
 
Description A talk or presentation - Professor Thompson Robinson 'Rates, Risks and Routes to Reduce Vascular Dementia update' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Professor Thompson Robinson gave an update on 'Rates, Risks and Routes to Reduce Vascular Dementia' at the West Midlands LCRN Meeting on 27th September 2019
Year(s) Of Engagement Activity 2019
 
Description A-Level workshop in the Oxford Natural History museum 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact A-Level workshop in the Oxford Natural History museum March 2017 Naiara Demnitz
Year(s) Of Engagement Activity 2017
 
Description AAIC 2017 - Dementias Platform UK Showcase presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A talk from several DPUK work packages on the component products and research ongoing as part of the Data Portal setup
Year(s) Of Engagement Activity 2017
URL https://portal.dementiasplatform.uk
 
Description AAIC 2017 DPUK quick-fire symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Theme: Public Health and Psychosocial

Session Title: Focused Topic Session: The Dementias Platform UK Informatics Infrastructure: A Live-Fire Exercise

Session Overview: The DPUK informatics infrastructure is the most comprehensive set of data access and management tools available to dementia research, covering cohort data, EHR linkage, imaging, wearables and genetics. It also provides access to a depth and breadth of data that cannot be found elsewhere. This feature research session will showcase the various components of the platform using live-online examples to demonstrate its ease and flexibility of use.

Learning Objectives:
• Describe the range of DPUK informatics tools available to the research community
• Demonstrate the range of DPUK informatics tools available to the research community
• Illustrate opportunities for international collaboration using DPUK informatics tools
Slot: Wednesday, July 19, 2017: 2:00 PM-3:30 PM
Year(s) Of Engagement Activity 2017
 
Description AAIC Los Angeles Annual Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact MODEL-AD presentation - Alzheimer's Susceptibility Genes Implicate Microglial Activity
Year(s) Of Engagement Activity 2019
 
Description ALZFORUM, article mentioning Insight 46 
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 A news article in ALZFORUM entitled, "Brain damage from cardiovascular disease starts earlier than you think". This article mentions data from Insight 46 and explanatory information provided by members of the Insight 46 data-collection team.
Year(s) Of Engagement Activity 2018
 
Description ARUK 2014 Annual Meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Other audiences
Results and Impact Julie Williams took part in a debate at the 2014 ARUK conference titled: Alzheimer's disease: The relative importance of Genes and Environment

The conference audience took part in the debate and positive feedback was recieved about this part of the conference.
Year(s) Of Engagement Activity 2014
URL http://www.alzheimersresearchuk.org/conference-programme/
 
Description ARUK Network Open Morning 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact About 150-200 people attended a morning of talks from Oxford researchers, including presentations on using stem cells in dementia research.
Year(s) Of Engagement Activity 2015,2016
 
Description ARUK Oxford Network Research Day presentation July 2019 - Bryan Ng 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact In July 2019, Bryan Ng attended the ARUK Oxford Network Research Day and gave a presentation
Year(s) Of Engagement Activity 2019
 
Description ARUK Oxford network dementia information event 
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 Open day of talks and information stands organised by Alzheimer's UK Oxford Research Network at John Radcliffe Hospital.
Talk by Sana Suri on Brain-Heart links
Year(s) Of Engagement Activity 2018,2019
URL https://www.oxdare.ox.ac.uk/public-events
 
Description ARUK Public Engagement open day 
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 Public engagement
Year(s) Of Engagement Activity 2015
 
Description ARUK Roundtable 
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 I have been invited and participated in a Roundtable discussion organized by Alzheimer's Research UK: "Where now for Alzheimer's disease research? Learning from recent clinical trials failures and planning for the future", 19 January, 2017
Year(s) Of Engagement Activity 2017
 
Description ARUK Scientific meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Scientific meeting
Year(s) Of Engagement Activity 2015
 
Description ARUK Technical Workshop 
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 Collaborative workshop to discuss the technical infrastructure of data sharing platforms, including DPUK to facilitate targeted treatments and research. Outcomes have resulted in collaborative networks, invitation to join steering committee, future workshop hosting (DPUK Data Portal), co-hosting of Datathons with ARUK-Turing, collaboration on a grant application and intellectual sharing of ideas.
Year(s) Of Engagement Activity 2018
 
Description ARUK UCL network public engagement called "Meet the Scientist", 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Sarah James, Kirsty (Macpherson) Lu, Hannah Carr, and Maria Popham participated in an ARUK-UCL network public engagement event called "Meet the Scientist". The Insight 46 team members set up an information stall called "Insight 46: Scanning people in the longest-running British Birth Cohort". The stall included information about the MRC National Survey of Health and Development and about Insight 46, including examples of cognitive tests.
Year(s) Of Engagement Activity 2018
 
Description ARUK 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 You tube channel for Alzhiemer's Research UK Oxford network centre. Includes talks from open days, panel discussions and short Q&A videos.
Year(s) Of Engagement Activity 2015,2017,2018
URL https://www.youtube.com/channel/UCU_wr013kmYXypvNCRzU3JA
 
Description ARUK conference 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Lots of questions

More interest in taking part in dementia research
Year(s) Of Engagement Activity 2015
 
Description ARUK conference poster presentation in March 2020 - Bryan Ng 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact ARUK conference poster presentation in March 2020 - Bryan Ng
Year(s) Of Engagement Activity 2020
URL https://www.alzheimersresearchuk.org/for-researchers/research-conference-2020/abstracts/
 
Description ARUK genetics filming for FAD 
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 N/A
Year(s) Of Engagement Activity 2019
 
Description ARUK network 2019 Exeter 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact The event was organised between the ARUK Bristol & Bath, Southwest (Exeter and Plymouth) and Wales networks. The aim was for members to meet, showcase research & build collaborations. J Williams spoke on Research infrastructure and resources: UKDRI as member of Cardiff University and UK Brain Banks Network
Year(s) Of Engagement Activity 2019
 
Description ARUK/BRC Oxford Dementia Research Day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact a day of talks celebrating the exciting research in the region including updates on some of the exciting big dementia research initiatives such as the ARUK Oxford Drug Discovery Institute, Dementia Platform UK, the NIHR Oxford Health Biomedical Research Centre and the Oxford Momentum Award. Accredited for 5 CPD credits.
Year(s) Of Engagement Activity 2017
URL https://www.dpag.ox.ac.uk/research/wade-martins-group/oxford-aruk-network-centre/research-day-2015
 
Description Academic Health Science Networks Webinar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Clare Mackay was invited to preset an AHSN Webinar in June 2017
Year(s) Of Engagement Activity 2017
URL http://atlas.ahsnnetwork.com/
 
Description Administrative Data Research Network Conference - Belfast, June 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A presentation on the DPUK Data Portal and the potential applications of Administrative Data and Linked Health Data
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Advisory Group (PPI) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Advisory group set up for PPI for fellowship - based on the research carried out under the DPUK platform
Year(s) Of Engagement Activity 2019
 
Description Alzheimer Society - Interview Re Fellowship 
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 Patients, carers and/or patient groups
Results and Impact N/A
Year(s) Of Engagement Activity 2019
 
Description Alzheimer's Association International Conference (AAIC) 
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 Present research at AAIC, which is the largest international meeting dedicated to advancing dementia science. The purpose is to disseminate our research and to learn about current and novel research in dementia science.
Year(s) Of Engagement Activity 2016
 
Description Alzheimer's Association International Conference (AAIC) Chicago 2018 (Computer Adaptive Testing) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster: Computer Adaptive Testing to Improve Mental Health Testing for Dementia-Focused Epidemiological Research: Bauermeister, S. & Gallacher, J.
Year(s) Of Engagement Activity 2018
 
Description Alzheimer's Association International Conference (AAIC) Chicago 2018 (DPUK Poster) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster: Dementias Platform UK (DPUK) Data Portal - World-leading infrastructure facilitating and supporting innovative Dementias research: Orton, C. et al., (presented on behalf of)
Year(s) Of Engagement Activity 2018
 
Description Alzheimer's Association International Conference (AAIC) Chicago 2018 (DPUK Talk) 
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: Dementias Platform UK (DPUK) Data Portal: Bringing Researchers to Data & Using the Power of Cohorts.
Talk given at the preconference for AAIC PIA DADA group.
Year(s) Of Engagement Activity 2018
 
Description Alzheimer's Association International Conference (AAIC) Chicago 2018 (Ontologies) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster: A New Generation Ontology for Cross-Cohort Dementia-Focused Epidemiological Research: Bauermeister, S. & Gallacher, J.
Year(s) Of Engagement Activity 2018
 
Description Alzheimer's Association International Conference (AAIC) London 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster presentation: Item Response Theory (IRT) for improving efficiency and reliability of scale delivery, and analysis in epidemiological research: Bauermeister, S. & Gallacher, J.
Year(s) Of Engagement Activity 2017
 
Description Alzheimer's Research UK Conference - London - Poster Presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster on the Data Portal was presented and substantial interest developed over the day of its presentation.
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description Alzheimer's Research UK Conference 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Poster presentation: The MRC DPUK Data Portal: Bringing Researchers to Data: The Research Journey: Bauermeister, S, Gallacher, J. et al.
Year(s) Of Engagement Activity 2017
 
Description Alzheimer's Society debate: How can we beat dementia in the next twenty years 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact Organised by the Alzheimer's Society. this involved patients, carers, supporters and the media who have had subsequent interest in research. very positive feedback from the Alzheimer's Society who were grateful for the input.
Year(s) Of Engagement Activity 2016
 
Description Alzheimer's gene study achieves landmark breakthrough 
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 Media (as a channel to the public)
Results and Impact Cardiff University publicised publication in Nature Genetics "Genetic meta-analysis of diagnosed Alzheimer's disease identifies novel risk loci and implicates Abeta, Tau, immunity and lipid processing" - aiming to raise public awareness of research being undertaken at UK Dementia Research Institute Cardiff
Year(s) Of Engagement Activity 2019
 
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 Annual 1946 cohort birthday card and newsletter 
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 The members of the National Survey of Health and Development (i.e., the 1946 British Birth Cohort) are sent an annual birthday card and newsletter. The newsletter updates the cohort on findings from analyses published throughout the year and updates on data collection. The cohort members report that they greatly appreciate the newsletter, as it allows them to see the value that their data provide to the scientific and medical community.
Year(s) Of Engagement Activity Pre-2006,2006,2007,2008,
 
Description Annual meeting of Organization for Human Brain Mapping (OHBM), Vancouver 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Vaanathi Sundaresan:Poster: "Modelling white matter hyperintensities distribution within a population using Bayesian Inference." Eniko Zsoldos: Poster: 'Mid-life composite measures of biological aging predict structural integrity measures in later life'. Johannes Klein Poster "Prefrontal network dysfunction in prodromal and manifest Parkinson's disease"
Year(s) Of Engagement Activity 2017
 
Description Annual report 2017 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The annual report summarised key areas of progress in Dementias Platform UK in 2017.
Year(s) Of Engagement Activity 2017
URL https://www.dementiasplatform.uk/about/annual-report-2017
 
Description Anti-Microbial Resistance Databank collaboration meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An invite to present the DPUK Data Portal as an exemplar use case of the UK Secure eResearch Platform, to a group interested in using the infrastructure.
Year(s) Of Engagement Activity 2017
URL https://portal.dementiasplatform.uk
 
Description Article in daily mail featuring DPUK study 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Principal Investigator of the Deep and Frequent Phenotyping (DFP) study was interviewed by the Daily Mail. The article stressed the importance of studies like DFP which will help researchers develop treatments at the early stages in the development of Alzheimer's disease. This raised the importance of this type of work amongst the general public.
Year(s) Of Engagement Activity 2018
URL http://www.dailymail.co.uk/health/article-5437893/Could-anti-stress-drug-help-beat-Alzheimers
 
Description Article in the Observer - Vaccination for AD 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact N/A
Year(s) Of Engagement Activity 2019
 
Description AstraZeneca drug libraries article on 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 Article on Astra Zeneca Drug library screening on DPUK website accessible in the "For Researchers" tab then "Our Research Communities"
Facilitated by DPUK, scientists at the University of Oxford are investigating the behaviour of drugs developed by AstraZeneca (AZ) on patient-specific cell models. They are looking to see if they can be used to target a range of neurodegenerative diseases, including Alzheimer's and Parkinson's diseases.
Year(s) Of Engagement Activity 2018,2019
URL https://www.dementiasplatform.uk/our-impact/repurposing-drug-libraries
 
Description Attend Parkinson's UK engagement event at St James' Palace, London 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact Attend reception at St James' Palace to raise awareness for Parkinson's disease
Year(s) Of Engagement Activity 2018
 
Description Attended the ARUK Oxford Network Outreach Day in March 2019 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The 2019 Dementia Awareness Day was held at the John Radcliffe Hospital in Oxford in March 2019. The Oxford ARUK Network Centre organise this event to discuss current dementia research taking place within the network centre, which includes the University of Oxford, Oxford Brookes University and University of Reading.
Year(s) Of Engagement Activity 2019
URL https://www.oxdare.ox.ac.uk/openday2019
 
Description BBC Horizon - filming 2015-16 
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 BBC Horizon were interested in making a programme about Alzheimer's disease with a focus on novel technology - especially imaging - for early diagnosis and trials.
Several meetings were held with the produced and his team and then several days of on-site filming including following a research subject.
The film is due to be shown in Spring 2016 as a one hour long programme which is likely to reach an audience of more than a million
Year(s) Of Engagement Activity 2015,2016
 
Description BBC One Saturday Breakfast News - Funny Side of Parkinson's 
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 Richard Wade-Martins appeared on BBC One Saturday Breakfast News with Paul Mayhew-Archer to discuss our research using stem cell technology to grow and study dopamine neurons from skin cells.
Year(s) Of Engagement Activity 2016
URL http://www.bbc.co.uk/news/health-35734888
 
Description BBC Panorama 
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 Prof Julie Williams Research Team were approached to be involved in a BBC documentary. The documentary followed one of our research participants and his family through everyday life with Alzheimer's disease. Field workers and laboratory staff were also filmed in their roles. The documentary was screened on BBC1 in Panorama on 2nd June 2016.
Year(s) Of Engagement Activity 2016
 
Description BBC Wales 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact I have given an interview for BBC Wales, broadcasted 20 April 2017
Year(s) Of Engagement Activity 2017
 
Description BBC Wales Dementia Week 2016 
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 Filming with BBC Wales's Owain Clarke on Thursday (12th May, 10-12). Interview is part of a package he's doing for Alzheimer's Awareness Week. Owain will be asking Prof Williams about Wales's research contribution; her own specific research and; look ahead at what's next.
Various excerpts were screened on BBC news throughout the week, featuring a number of different staff from the team at Cardiff. This raised awareness of our work and the profile of the team.
Year(s) Of Engagement Activity 2016
 
Description BBC panorama 
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 BBC Panorama are following an EOAD participant. The initial interview was filmed by the BBC
Year(s) Of Engagement Activity 2016
 
Description BBC radio 'World at One' mini-series 
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 A two-part mini series on the Deep and Frequent Phenotyping study (one of the DPUK work packages) was broadcast on BBC radio 4's World at One programme and on the BBC world service. The series profiled the scientists' work, setting out the importance of participation in dementia research studies and the current focus on early stage trials for dementia.
Year(s) Of Engagement Activity 2017
URL https://soundcloud.com/user-172249820/world-at-one-26-27-june-2017
 
Description Big Data - next big thing: evaluation. Presentation to 1st NHS Wales Digital Health and Care Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Invited talk on the future of health informatics and 'Big Data' for the NHS. The purpose was to demonstrate what was already happening, how evaluations of numerous interventions were being carried out using multi-sectoral data linkage, how this was also supporting DiscoverY Science and the potential for these activities to grow into normal practice for the NHS and wider public services.
Year(s) Of Engagement Activity 2017
 
Description Big data and public health 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Sanda Macara BMA Memorial Lecture, Cardiff
Year(s) Of Engagement Activity 2020
 
Description Biomarkers - the be all and end all of dementia diagnosis? AAIC, Chicago 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact N/A
Year(s) Of Engagement Activity 2018
 
Description Blog by Bryan Ng on DPUK website 
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 Article on DPhil student Bryan Ng's project in Richard Wade-Martins' lab.
Disease-in-a-dish studies open a window to a new level of detail in dementia
Year(s) Of Engagement Activity 2019
URL https://www.dementiasplatform.uk/blog/disease-in-a-dish-studies-open-a-window-to-a-new-level-of-deta...
 
Description Booth at Alzheimer's Association International conference 2017 
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 Visitors to the DPUK booth at the AAIC conference were able to learn more about DPUK's free resources for researchers through DPUK staff and scientists, literature and practical demonstrations of the Data Portal. The principal impact was awareness raising of DPUK's resources and funding amongst key users (the researchers) and other funders in the dementia research sector.
Year(s) Of Engagement Activity 2017
URL https://www.dementiasplatform.uk/upcoming-events/aaic-2017
 
Description Brain Health/Biomarker Panelist at BIOMED Conference 2018, Tel Aviv 
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 A key point for discussion in the overall Brain Health track was that there is abundant opportunity for us to discover new ways to treat brain disease, and in particular age-related dementias. Tapping into this potential, however, will require better ways of diagnosing, distinguishing, characterising and tracking dementias so that we can understand better which patients we are trying to treat, and how to target their particular set of biological and behavioural phenotypes. In this context, we will be asking the "Getting Closer to Validated Biomarkers" panel to explore where we are now, where we need to be, and how to get there.

Each panellist spoke for 5-10 minutes on any aspect of this topic. John's fellow panelists were Prof Nir Giladi, a clinical and research specialist in Parkinson's and movement disorders (please see quick biography from the Michael J Fox Foundation website https://www.michaeljfox.org/foundation/researchers.php?id=924) and Mike Irizarry, a senior leader in Eli Lilly's neuroscience group with medical and academic experience in Alzheimer's and other dementias and in public health.

This involvement developed relationships with key industry contacts in the UK dementia landscape (eg the DDF) and lead to several enquiries from industry colleagues about how they could collaborate with DPUK.
Year(s) Of Engagement Activity 2018
URL http://kenes-exhibitions.com/biomed/
 
Description Brains for Dementia Research Study Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation on the use of BDR data on the DPUK Data Portal to the cohort study panel
Year(s) Of Engagement Activity 2018
URL https://portal.dementiasplatform.uk
 
Description British NeuroPsychiatric Association Annual meeting 24th February - medalist Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion of nosological challanges in Dementia
Year(s) Of Engagement Activity 2016,2017
URL http://bnpa.org.uk/wp-content/uploads/2017/02/BNPA-FINAL-PROGRAMME-2017.pdf
 
Description British Neuroscience Association Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Sana Suri: Talk: British Neuroscience Association Conference, Birmingham April 2017: "The APOE Paradox"
Year(s) Of Engagement Activity 2017
 
Description British Science Festival 2016 Workshops 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We used VR tools to demonstrate the impact of dementia on people's everyday lives. These included using the experiences "A Walk Through Dementia", our citizen science game "Sea Hero Quest", some activities from out children's website, as well as hands on activities and memory games.
Year(s) Of Engagement Activity 2016
URL https://www.britishsciencefestival.org/
 
Description Bryan Ng attended the Alzheimer's Association International Conference and presented a poster in July 2019 
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 In July 2019, Bryan Ng attended the Alzheimer's Association International Conference and presented a poster.
Year(s) Of Engagement Activity 2019
URL https://c-path.org/poster-presentation-at-the-2019-alzheimers-association-international-conference-j...
 
Description CFAS DPUK Site Visit - November 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Dr Sarah Bauermeister (Senior Data Manager) and John Gallacher made several site visits to our DPUK cohorts across the country to provide updates on ongoing developments and plans for DPUK2, one of them being CFAS. This included an overview presentation and a Data Portal demonstration showcasing updated DPUK data visualisation tools as part of ongoing website and Data Portal developments. They also shared more information about the DPUK datathon programme, the 3-day datathon workshops utilising cohort data within the Data Portal at host institutions. These events are attracting multi-disciplinary researchers and encouraging collaborative research opportunities to take forward to full DPUK proposals. Post-event, a meeting with CFAS' other key investigator, Prof Fiona Matthews in Newcastle University, was arranged to continue discussions further.
Year(s) Of Engagement Activity 2019
URL http://www.cfas.ac.uk/
 
Description CSaP talk - How to stop bad data driving out the good in an age of misuse, misleadingness and misinformation 
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 CSaP talk - How to stop bad data driving out the good in an age of misuse, misleadingness and misinformation
4 March 2019

Ed Humpherson is the CEO of the Office of Statistics Regulation. He gave an elegant talk about how numbers can be used poorly - The Number, misleading and too much unsignposted data. He talked about creating standards and reporting on these, how his office has interacted with government departments to call such practice out and how they have responded. He also talked about responsible media.

I gained insight into how such a government function can operate to hold government to account. It highlighted the fact that this is possible to do within a (relatively) stable governmental/public domain structure but that it would be unlikely professional integrity heading for CPD.
Year(s) Of Engagement Activity 2019
 
Description Cecilia (Heyne) Lee Pint of Science Public Engagement Talk, Oxford 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Pint of Science Public Engagement Talk, Oxford, Autumn 2016 on using iPSC for modelling neurodegeneration
Year(s) Of Engagement Activity 2016
 
Description Cheltenham Science Festival 
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 Hands-on experiments, the MakerShack, our brand new Cyber Zone, heartbeat art there was much to explore on site in 2018!

From stargazing, fun activity trails, family days and heated discussions in the Conversation Corner to a large animal dissection live on the Festival site, Cheltenham Science Festival offers science galore for all ages.

Dr Tara Caffrey took part in the day to talk about her research into Tau.
Year(s) Of Engagement Activity 2018
URL https://www.cheltenhamfestivals.com/science
 
Description Cheltenham Science Festival 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Talk led to a lot of questions and discussion - for almost an hour after the event

A number of people expressed interest in taking part in research
Year(s) Of Engagement Activity 2014,2015
URL http://www.dementiasplatform.uk/event/cheltenham-science-festival/
 
Description Cheltenham Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The Festival theme 2019 was health and wellbeing, considering everything from the food we eat and our exercise regimes to cutting-edge medical research. As part of this theme, the event explored the latest breakthroughs in dementia research. The panel was asked to talk about the broad landscape in this field and its evolution in recent years, key achievements and challenges and an insight into how the diagnosis and treatment of dementia has changed and developed. J Williams talked about cutting-edge research and expertise and the exciting aspects of her own work within this area
As populations have aged, dementia has become the fifth biggest cause of death worldwide. Yet despite its devastating consequences there is currently no cure. What do we know about this group of diseases, and are there things we can do to help reduce our risks and keep our brains fighting fit? Alzheimer's disease specialist Julie Williams and psychiatrist Ivan Koychev discuss the latest breakthroughs and discoveries that are helping to prevent, diagnose and treat dementia more effectively.
Year(s) Of Engagement Activity 2011,2019
 
Description Clare Mackay talk - New developments in Parkinson's and Alzheimer's research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact OPDC's Imaging lead Professor Clare Mackay and Masud Husain, Professor of Neurology and Cognitive Neuroscience, spoke at a talk open to all about "New developments in Parkinson's and Alzheimer's research".

In this accessible and informative public talk they explored the latest research into the debilitating neurodegenerative disorders Alzheimer's and Parkinson's. They showed how cutting edge research is: increasing our knowledge of the mechanisms causing these disorders, offering the prospect of earlier diagnosis and supporting the development of potential new therapies to slow the progression of the disease.
The talk was filmed as is available to view online
Year(s) Of Engagement Activity 2018
URL https://youtu.be/WtmCPdTdmPc
 
Description Co-chair for a session at an ARUK workshop: tackling gaps in Developing Life-Changing Treatments for Dementia 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact A workshop on 15-16 May in London to critically evaluate the current gaps in progressing toward an effective therapeutic intervention, and develop tangible plans to resolve these gaps. We know that since the G8 summit in 2013, several initiatives and roadmaps have been developed to increase investment and global attention. However, reviews of progress and changes in the research landscape show key gaps that are not currently being addressed.

John co-chaired a session (alongside Nick Fox) called - How do we choose the right patients for proof-of-concept clinical trials?

This workshop strengthened relationships with key people involved in the dementia research landscape and influenced the design of the Great Minds clinical studies register in DPUK.
Year(s) Of Engagement Activity 2018
URL https://www.alzheimersresearchuk.org/
 
Description Cognitive measures in DPUK cohorts: A resource for researchers. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Supporters
Results and Impact Calvin C, et al. (2018). Cognitive measures in DPUK cohorts: A resource for researchers. Poster presentation at Dementias Platform UK Annual Conference, British Medical Association, London on 23 April 2018.
Year(s) Of Engagement Activity 2018
 
Description Cognitive test harmonisation across Dementias Platform UK cohorts. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Calvin C (2019). Cognitive test harmonization across De