The GENetic Frontotemporal Dementia Initiative (GENFI): a new multi-centre platform for the study of frontotemporal lobar degeneration

Lead Research Organisation: University College London
Department Name: Institute of Neurology

Abstract

The frontotemporal lobar degenerations (FTLD) are a group of dementias characterized by progressive loss of brain cells from the frontal and temporal lobes. Frequently affecting a relatively younger age group compared with other dementias they collectively constitute a major socio-economic and human burden. FTLD commonly runs in families with many patients having a particular genetic mutation as the cause of their disease. The heritable nature of FTLD amplifies the human cost of these diseases but also creates a unique opportunity for making an earlier diagnosis and intervening at an early stage of disease. The understanding of FTLD has hugely advanced in recent years but this has yet to lead to any effective disease-modifying therapies. It is likely that any further progress towards this goal will depend on collaboration between specialist centres. The GENetic Frontotemporal Dementia Initiative (GENFI) aims to unite the expertise and resources of five internationally recognised research departments in the field. The objective of GENFI will be to set up a multi-national consortium with a common platform for the assessment of genetic FTLD patients. Clinical, behavioural, brain imaging, spinal fluid and blood sample data will be collected with the aim of developing markers of the onset and progression of disease in FTLD. Ultimately, the study will explore the feasibility of using the common framework developed here to support future large-scale studies of FTLD, in particular the development of clinical trials of disease-modifying interventions.

Technical Summary

The frontotemporal lobar degenerations (FTLD) are a group of dementias characterized by progressive loss of brain cells from the frontal and temporal lobes. Frequently affecting a relatively younger age group compared with other dementias they collectively constitute a major socio-economic and human burden. FTLD commonly runs in families with many patients having a particular genetic mutation as the cause of their disease. The heritable nature of FTLD amplifies the human cost of these diseases but also creates a unique opportunity for making an earlier diagnosis and intervening at an early stage of disease. The understanding of FTLD has hugely advanced in recent years but this has yet to lead to any effective disease-modifying therapies. It is likely that any further progress towards this goal will depend on collaboration between specialist centres. The GENetic Frontotemporal Dementia Initiative (GENFI) aims to unite the expertise and resources of five internationally recognised research departments in the field. The objective of GENFI will be to set up a multi-national consortium with a common platform for the assessment of genetic FTLD patients. Clinical, behavioural, brain imaging, spinal fluid and blood sample data will be collected with the aim of developing markers of the onset and progression of disease in FTLD. Ultimately, the study will explore the feasibility of using the common framework developed here to support future large-scale studies of FTLD, in particular the development of clinical trials of disease-modifying interventions.

Planned Impact

It is expected that the research will lead to academic presentations at high-profile international meetings and publications in a range of peer-reviewed journals particularly targeted at clinicians, imaging scientists and neuropsychologists. In addition, the applicants have been closely involved in national and international initiatives that are formulating clinical and research policy in degenerative dementias (Rossor: director of Dementias and Neurodegenerative Diseases Research Network (DeNDRoN); Rohrer: Consensus guidelines for diagnosis of PPA; Rossor, Rohrer, Warren: Consensus guidelines for diagnosis of bvFTD; Rossor, Warren: EFNS Consensus guidelines for diagnosis and management of non-Alzheimer dementias). Ongoing participation in such initiatives will be directly informed by results arising from this research.

Publications

10 25 50
 
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 presentation at Snape Maltings music centre 
Description Interactive workshop with musicians 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2017 
Impact not yet 
 
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 Cambridge Dementia Course
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.cambridgedementiacourse.com/index.html
 
Description Canadian Consortium on Neurodegeneration in Aging (CCNA)
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description Development of a methodological framework of presymptomatic clinical trials
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Fondation Plan Alzheimer SAB meeting evaluation proposals Alzheimers Disease
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
Description German Centre for Neurodegenerative Diseases (DZNE) scientific review
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
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 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 World Dementia Council
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Participation in a advisory committee
 
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 Academic/University
Country United Kingdom
Start 05/2015 
End 04/2020
 
Description JPND - Working Groups to Inform Cohort Studies in Neurodegenerative Disease Research
Amount € 34,178 (EUR)
Organisation EU Joint Programme - Neurodegenerative Disease Research (JPND) 
Sector Public
Country European Union (EU)
Start 10/2014 
End 05/2015
 
Description MRC Dementias Platform
Amount £6,236,753 (GBP)
Funding ID CSUB19166 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 04/2014 
End 03/2019
 
Title GENFI Biobank 
Description Repository of CSF and serum samples from subjects in the GENFI study. 
Type Of Material Biological samples 
Year Produced 2014 
Provided To Others? Yes  
Impact to be provided by Jonathan Rohrer 
 
Title CHaRMeD (REDCap-based) 
Description Memory Clinic and alied research projects research database. 
Type Of Material Database/Collection of data 
Year Produced 2016 
Provided To Others? Yes  
Impact Integration and improved governance of dementia database. 
 
Title GENFI XNAT database 
Description Database of biomarker data from the GENFI 1 and GENFI 2 projects (presymptomatic and early symptomatic genetic FTD). 
Type Of Material Database/Collection of data 
Year Produced 2014 
Provided To Others? Yes  
Impact 30 current analyses ongoing across multiple centres within GENFI. 
 
Title MRC Dementia Platform UK 
Description The DPUK is creating the world's largest population study for use in dementias research, bringing together two million participants aged 50 and over, from 22 existing study groups within the UK. Included are people from the general population, people known to be at-risk of developing dementia, and people diagnosed with early-stage dementia. 
Type Of Material Database/Collection of data 
Year Produced 2015 
Provided To Others? Yes  
Impact By adding to information that we already know about the participants (such as their diet, exercise habits and previous infections) we hope to identify cognitive, genetic, physiological and imaging measures (biomarkers) to understand who is at risk of developing dementia and why the progression of dementia varies from person to person. The DPUK is taking a new approach that considers what is happening to the health of the person - looking not just at the brain but at the brain in the context of the whole body - to identify those changes that may best be associated with the early stages of dementia. Emerging evidence has linked the development of dementia with inflammatory, cardiovascular and metabolic events and disorders, and the DPUK will be able to test these interactions, potentially identifying new treatment options to both manage symptoms, in the near term, and for preventive approaches in the longer term. The platform will further allow the testing and validation of novel hypotheses by studying and comparing data from different DPUK cohorts. This will provide valuable feedback to inform future mechanistic research for example using stem cells or animal models. 
URL http://www.mrc.ac.uk/research/facilities/dementias-platform-uk/
 
Description Genetic FTD Initiative 
Organisation Erasmus University Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution This grant initially involved five centres and we have engaged with further international centres with an expertise in genetic frontotemporal dementia in order to expand and strengthen the consortium.
Collaborator Contribution They have worked with us to develop the consortium and increase the size of the patient cohort studied.
Impact This is a proof of concept study and we are preparing a second application with our international collaborators. PET TAU scanning has commenced for familial FTD For Work Package 4.
Start Year 2012
 
Description Genetic FTD Initiative 
Organisation Karolinska Institute
Country Sweden 
Sector Academic/University 
PI Contribution This grant initially involved five centres and we have engaged with further international centres with an expertise in genetic frontotemporal dementia in order to expand and strengthen the consortium.
Collaborator Contribution They have worked with us to develop the consortium and increase the size of the patient cohort studied.
Impact This is a proof of concept study and we are preparing a second application with our international collaborators. PET TAU scanning has commenced for familial FTD For Work Package 4.
Start Year 2012
 
Description Genetic FTD Initiative 
Organisation University of Florence
Department Department of Neurological and Psychiatric Sciences
Country Italy 
Sector Academic/University 
PI Contribution This grant initially involved five centres and we have engaged with further international centres with an expertise in genetic frontotemporal dementia in order to expand and strengthen the consortium.
Collaborator Contribution They have worked with us to develop the consortium and increase the size of the patient cohort studied.
Impact This is a proof of concept study and we are preparing a second application with our international collaborators. PET TAU scanning has commenced for familial FTD For Work Package 4.
Start Year 2012
 
Description Genetic FTD Initiative 
Organisation University of Manchester
Department Institute of Brain, Behaviour and Mental Health
Country United Kingdom 
Sector Academic/University 
PI Contribution This grant initially involved five centres and we have engaged with further international centres with an expertise in genetic frontotemporal dementia in order to expand and strengthen the consortium.
Collaborator Contribution They have worked with us to develop the consortium and increase the size of the patient cohort studied.
Impact This is a proof of concept study and we are preparing a second application with our international collaborators. PET TAU scanning has commenced for familial FTD For Work Package 4.
Start Year 2012
 
Description Genetic FTD Initiative 
Organisation Western University
Country Canada 
Sector Academic/University 
PI Contribution This grant initially involved five centres and we have engaged with further international centres with an expertise in genetic frontotemporal dementia in order to expand and strengthen the consortium.
Collaborator Contribution They have worked with us to develop the consortium and increase the size of the patient cohort studied.
Impact This is a proof of concept study and we are preparing a second application with our international collaborators. PET TAU scanning has commenced for familial FTD For Work Package 4.
Start Year 2012
 
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 10 March 2017, Masterclass Case Course (Copenhagen) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact -postgraduate- 1 day grand round review of 6 patients.
Year(s) Of Engagement Activity 2016,2017
 
Description 11th ASAD joint conference 2017 (2-4 August 2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This conference will bring up internationally academic information and knowledge, provide a great opportunity for strengthening collaboration and experience sharing by the renowned speakers from all over the world. We are proud to convene one of the best ever scientific and social programs in this conference. We hope it can initiate promising dementia research and comprehensive knowledge for tackling dementia in real practice.
Year(s) Of Engagement Activity 2017
URL https://www.businesseventsthailand.com/nc/event-calendar/view/event/1141-joint-conference-fighting-d...
 
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 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 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 DPUK Executive team discussion (6 March 2017) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact analysing cohort cost recovery model paper discussions to update and finalise the executive team position on this issue.
Year(s) Of Engagement Activity 2017
 
Description Dementia and Neurodegeneration Network Ireland (DNNI) Inaugural conference (30 November 2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact explore current research/future directions in the Dementia/Neurodegeneration field, effective funding models for research and the importance of interdisciplinary collaboration.
Year(s) Of Engagement Activity 2017
URL https://www.eventbrite.ie/e/dnni-conference-2017-tickets-37728733658#
 
Description EADC 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited to speak at the European Alzheimer's Disease Collaboration meeting in Monte Carlo in October 2012, to 40 other primary investigators from across Europe.

2 sites interested in joining collaboration after presentation.
Year(s) Of Engagement Activity 2012
 
Description FTD Cohort Presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact The FTD cohort was discussed at the annual ARUK Centre Public Engagement Activities.

We have also established a familial dementia patient group.
Year(s) Of Engagement Activity 2011
 
Description FTD talk 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 I have set up and run a public engagement website dedicated to frontotemporal dementia (FTD talk) - it aims to provide information to the public about FTD, and particularly lay updates about research.
Year(s) Of Engagement Activity 2014,2015,2016,2017
URL http://www.ftdtalk.org
 
Description FTD/GENFI Support Group 23Nov13 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact Patient and carer input into planning future activities.

-
Year(s) Of Engagement Activity 2013,2014
 
Description Familial FTD Meeting 16 Jul 14 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Patient and carer input into planning future activities

-
Year(s) Of Engagement Activity 2014
 
Description Familial FTD support group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Talk to around 100 people as part of the familial FTD support group annual day - discussion about GENFI and current research; questions and discussion about research from family members and those at risk of developing genetic FTD.
Year(s) Of Engagement Activity 2015
URL https://www.ucl.ac.uk/drc/support-groups/fFTD-support-group
 
Description GENFI Investigators' Meeting and Dinner 4 July 2013 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Plans for analysis of data and future grant applications

National Grant Applications by our international colleagues.
Year(s) Of Engagement Activity 2013
 
Description Invited Speaker at FTD Conference in San Francisco 14-16Nov13 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact This is the major annual FTD conference

-
Year(s) Of Engagement Activity 2013
 
Description JPND Workshop on Public Health in Neurodegenerative Disease (21 June 2017) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This workshop is an initiative of the EU Joint Programme - Neurodegenerative Disease Research (JPND), the largest global research initiative tackling the challenge of neurodegenerative disease (NDD). The JPND Scientific Advisory Board has identified public health as an emerging area in the context of NDD research, with relevance to basic, clinical and health and social care domains. In addition, dementia has been recognised as a public health priority by the WHO and the G8 dementia
summit declaration (2013).
The workshop output will help to inform the refresh of the JPND Research Strategy planned for delivery in early 2018 in light of the views of stakeholders. This Research Strategy will provide a framework for future investment in NDD research over the next five to ten years. The output of this meeting should be objective scientific consensus and should not be concerned with national perspectives. It should also be noted that the workshop is for discussion at a broad level and is not intended to provide a format for presenting new research data nor is it at this stage about formulating future calls for proposals.
Year(s) Of Engagement Activity 2017
 
Description Joint Programme for Neurodegenerative Disease (JPND) Scientific Advisory Board (SAB) strategic workshop on precision medicine (13 March 2017) 
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 The purpose of the workshop is to bring together clinicians, basic scientists and industry scientists to examine how the precision/stratified medicine concept can be applied to neurodegenerative disease research.
Year(s) Of Engagement Activity 2017
 
Description Meet the researcher Youtube video 
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 Video made to inform people about research at UCL - interview about work on FTD.
Year(s) Of Engagement Activity 2014,2015,2016,2017
URL https://www.youtube.com/watch?v=8oMe4bgSHoY&feature=youtu.be
 
Description Rowe - 11th Cambridge Dementia Course. Oliver Cousins for Advances in Clinical Neuroscience and Rehabilitation (ACNR), (2017). 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Rowe, J. B. (11th April 2017). 11th Cambridge Dementia Course. Oliver Cousins for Advances in Clinical Neuroscience and Rehabilitation (ACNR).
Year(s) Of Engagement Activity 2017
URL http://www.acnr.co.uk/2017/04/11th-cambridge-dementia-course/
 
Description Rowe - Cambridge Science Festival (2017) 
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 Lecture at Cambridge Science Festival
Year(s) Of Engagement Activity 2017
 
Description Rowe - Cambridge Science Festival 2018 - Molecules to Memory - Advances in Dementia Research, hosted by ARUK local network 
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 talk at Cambridge Science Festival
Year(s) Of Engagement Activity 2018
 
Description Rowe - FTD Carers' Meeting. Department of Clinical Neurosciences, University of Cambridge (2017). 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Rowe, J. B. (13th September 2017). FTD Carers' Meeting. Department of Clinical Neurosciences, University of Cambridge; give feedback to carers and also get feedback from them.
Year(s) Of Engagement Activity 2017
 
Description Rowe - FTD-UK Annual Meeting (2017) - Debate 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A discussion of imaging's contribution to FTD diagnosis, prognosis and stratification
Year(s) Of Engagement Activity 2017
 
Description Rowe - For the Dementia Awareness Week: Professor James Rowe of @CamNeuro on Cambridge s role in dementia research. University of Cambridge, (2017). 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Rowe, J. B. (17th May 2017). For the Dementia Awareness Week: Professor James Rowe of @CamNeuro on #Cambridge's role in dementia research. University of Cambridge, Cambridge TV @cambridgetvnews (Twitter Video).
https://twitter.com/cambridgetvnews/status/864790164861800448; awareness for dementia
Year(s) Of Engagement Activity 2017
URL http://twitter.com/cambridgetvnews/status/864790164861800448
 
Description Rowe - Look East. The latest news, sport and weather for the East of England. BBC One. (Feature about PSP Association) (2017) 
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 Rowe, J. B. (16th May 2017). Look East. The latest news, sport and weather for the East of England. BBC One. (Feature about PSP Association).
Year(s) Of Engagement Activity 2017
 
Description Rowe - Misplace in Space (2016-2017) 
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 Rowe, J. B. (1st-6th September 2017). Misplaced in Space. Emily Fisher, Work by MA students shown in the MA Degree Show 2017 with work related to individual's experience to live with dementia. Norwich University of the Arts, UK. http://www.nua.ac.uk/ma-degree-show-catalogue-2017/emily-fisher/; An interactive exhibition about living with Dementia,
Year(s) Of Engagement Activity 2017
URL http://www.nua.ac.uk/ma-degree-show-catalogue-2017/emily-fisher/
 
Description Rowe/Team - Cambridge Science Festival (2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A lecture on the challenge of dementia as part of the Cambridge Science Festival
Year(s) Of Engagement Activity 2017
 
Description Rowe/Team - The University of the third age (U3A) (2016) 
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 The CamCAN project including CC-Frail from ACA5, was the focus of a special day event organised by the U3A
Year(s) Of Engagement Activity 2016
 
Description Rowe: FTD carers meeting (2017) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Research discussion to regional carers
Year(s) Of Engagement Activity 2017
 
Description Scientific Advisory Board meeting of the EU Joint Programme on neurodegenerative disease (January 2014) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion around disease definitions and diagnosis

-
Year(s) Of Engagement Activity 2014
 
Description Sidney de Haan lecture (May 2014) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Discussion on frontotemporal dementia & what we learn from our patients



-
Year(s) Of Engagement Activity 2014
 
Description Talk at FTD support group annual seminar 2017 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Increased awareness of FTD research and the work we are doing to FTD support group consisting mainly of carers.
Year(s) Of Engagement Activity 2017
 
Description The Science Museum - Science Lates - Dementia 
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 Organised and presented at a section of the Science Museum 'Science Lates' evening in April 2016. My section had 5 stands (manned by 10 of my team) each focused on different parts of clinical and imaging dementia research that represented our current research work, particularly focusing on young onset and genetic dementias. >4000 people attended the event. Many people said that their views and understanding about dementia changed as a result of visiting our section.
Year(s) Of Engagement Activity 2016
 
Description to explore new areas of project development for the EBC and the continuation of their Value of Treatment white paper (13-14 September 2017) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact guest speaker at the David Hobman Annual Lecture, which is a long-standing event hosted by Age UK and the Institute of Gerontology at King's College London. Guest speaker presents a lecture on a topic affecting older people.
Year(s) Of Engagement Activity 2017
URL https://www.ageuk.org.uk/our-impact/conferences/david-hobman-annual-lecture/