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.
Organisations
- University College London (Lead Research Organisation)
- Western University (Collaboration)
- University of Manchester (Collaboration)
- Karolinska Institute (Collaboration)
- Erasmus MC (Collaboration)
- University of California, San Francisco (Collaboration)
- Van Andel Institute (Collaboration)
- University of Florence (Collaboration)
Publications
Ahmed RM
(2021)
Tackling clinical heterogeneity across the amyotrophic lateral sclerosis-frontotemporal dementia spectrum using a transdiagnostic approach.
in Brain communications
Altmann A
(2020)
Analysis of brain atrophy and local gene expression in genetic frontotemporal dementia.
in Brain communications
Barbier M
(2021)
SLITRK2, an X-linked modifier of the age at onset in C9orf72 frontotemporal lobar degeneration.
in Brain : a journal of neurology
Benatar M
(2022)
Preventing amyotrophic lateral sclerosis: insights from pre-symptomatic neurodegenerative diseases.
in Brain : a journal of neurology
Benussi A
(2022)
Conceptual framework for the definition of preclinical and prodromal frontotemporal dementia.
in Alzheimer's & dementia : the journal of the Alzheimer's Association
Benussi A
(2021)
Progression of Behavioral Disturbances and Neuropsychiatric Symptoms in Patients With Genetic Frontotemporal Dementia.
in JAMA network open
Bergeron D
(2018)
Prevalence of amyloid-ß pathology in distinct variants of primary progressive aphasia.
in Annals of neurology
| 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 guidance/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 guidance/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 guidance/advisory committee |
| Description | German Centre for Neurodegenerative Diseases (DZNE) scientific review |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/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 guidance/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 guidance/advisory committee |
| Description | World Dementia Council |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Participation in a guidance/advisory committee |
| 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 | 03/2017 |
| End | 03/2022 |
| 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 | 04/2015 |
| 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 | 09/2014 |
| End | 05/2015 |
| Description | MRC Dementias Platform |
| Amount | £6,236,753 (GBP) |
| Funding ID | CSUB19166 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2014 |
| End | 03/2019 |
| Description | Novel fluid biomarkers of progranulin-associated FTD |
| Amount | $219,999 (USD) |
| Organisation | Bluefield Project |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 01/2019 |
| End | 12/2020 |
| 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 | Frontotemporal dementia Prevention Initiative - FPI |
| Organisation | University of California, San Francisco |
| Department | Memory and Ageing Centre UCSF |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This is a collaboration of the GENFI study led by me with other international studies - ARTFL/LEFFTDS in the US and DINAD in Australia. I jointly lead the initiative |
| Collaborator Contribution | The PIs of the studies jointly run this collaboration - we have developed shared guidelines for academic-pharma partnerships for future clinical trials in FTD as well as a shared dataset. |
| Impact | The collaboration has developed guidelines for academic-pharma partnerships which will be used in upcoming trials. |
| Start Year | 2017 |
| Description | Genetic FTD Initiative |
| Organisation | Erasmus MC |
| Country | Netherlands |
| Sector | Hospitals |
| 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 | Genetics of neurodegeneration collaboration with Van Andel University |
| Organisation | Van Andel Institute |
| Country | United States |
| Sector | Private |
| PI Contribution | several hundred dementia case samples from longitudinal series of deep phenotyping |
| Collaborator Contribution | genotyping and genotype interpetation |
| Impact | pending |
| Start Year | 2019 |
| 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 | 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 | 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 | 8th FTD UK conference |
| 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 | 180 delegates 10.00am Welcome to the meeting and introduction Professor Stuart Pickering-Brown, Dr Jonathan Rohrer & Professor James Rowe 10.10am The MLSE Peter Garrard (St George's Hospital London) 10.30am Functional Networks in Genetic FTD - Susceptibility and Resilience Tim Rittman (University of Cambridge) 10.50am Disease modelling approaches to FTD Alexandra Young (UCL) 11.10am Coffee break 11.40am There's something wrong with my MAM; ER-mitochondria signaling and neurodegenerative diseases Chris Miller (King's College London) 12.00pm C9orf72 FTD/ALS: mechanisms and therapeutics Adrian Isaacs (UCL) 12.20pm Gene therapy approaches to ALS Pam Shaw (Sheffield) 12.40pm Lunch 1.40pm Novel therapies for GRN-related FTD Robert Paul (Alector) 2.00pm Novel cell-based therapies for FTD Johan Lundkvist (Alzecure) 2.20pm Coffee break 2.50pm Improving the diagnostic pathway for patients with FTD Panel discussion 3.30pm Basic Science Prize for Early Career UK FTD Researcher 3.40pm Clinical Science Prize for Early Career UK FTD Researcher 3.50pm Update on UK dementia initiatives |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://www.ftduk.org/ |
| Description | Apathy Special Interest Group, ABN |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | An afternoon workshop for UK specialists, including lecture on work arising from this program and extensive discussion |
| Year(s) Of Engagement Activity | 2019 |
| 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 | CCPP patient liaison |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A patient liaison group, to advise and feedback on experience of research participation, and future studies' documentation. |
| Year(s) Of Engagement Activity | 2018,2019 |
| 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 | Danish Dementia masterclass |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A whole day masterclass in Copenhagen for dementia specialists across Scandinavia. I lecture, then the rest of the day in case based discussions, analysis and Q&A. |
| Year(s) Of Engagement Activity | 2018 |
| 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 KOL meeting - University of Pennsylvania |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | A meeting with KOL from academia and industry with the FDA, on new science based trials designs for FTD |
| Year(s) Of Engagement Activity | 2019 |
| Description | FTD UK Conference, Cambridge UK 2019 |
| 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 | A UK wide cross sector meeting on advances in FTD, from basic science to new theapeutics |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://www.ftduk.org/ |
| Description | FTD carers meeting |
| 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 | Afternoon event for carers of people with FTD, updating on research, clinical practice, open Q&A and networking among carers |
| Year(s) Of Engagement Activity | 2018 |
| Description | FTD support group meeting |
| 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 | ~70 people attended, mainly carers but also professionals, to hear about the latest research, with a question and answer session afterwards including discussion of patient involvement in future study design. |
| Year(s) Of Engagement Activity | 2018 |
| 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. There is an active blog about my research. |
| Year(s) Of Engagement Activity | 2014,2015,2016,2017,2018,2019,2020,2021 |
| 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 | GENFI international meeting |
| 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 | two day workshop on genetic FTD, progress in research and future prospects |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://genfi.org.uk/ |
| Description | Genetic diagnosis of dementia |
| 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 | EAN 2018 special event and debate on genetic diagnosis of young onset dementia - making the case for expansion of genetic services available. Matched paper published in JNNP |
| Year(s) Of Engagement Activity | 2018 |
| 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 | MRC CBU Science Night - Cambridge Science Festival 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 | Demonstrations of research studies, including VR game |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://www.mrc-cbu.cam.ac.uk/blog/2019/01/mrc-cbu-science-night-cambridge-science-festival-2019/ |
| 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 | PPE - Cambridge university Hospitals Trust members |
| 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 | An evening event for the members of the Trust (patients, and local public) to discuss advances in dementia research and care, including the insights from new technologies |
| Year(s) Of Engagement Activity | 2019 |
| Description | Pharma partnerships under CDA |
| 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 series of six pharma partnership meetings related to PSP and FTD novel therapeutics, under CDA/NDA Scoping the needs and opportunity, reviewing candidate product preclinical data, and developing better trial design, |
| Year(s) Of Engagement Activity | 2018 |
| Description | Rittmann, T. (14th May 2018). The story of a noisy brain. Pint of Science, Annual Science Festival, Castle Bar, Cambridge, UK |
| 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 | Increase awareness. Discuss science with general public |
| Year(s) Of Engagement Activity | 2018 |
| 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/ |