The UK GENetic Frontotemporal dementia Initiative (UK GENFI)
Lead Research Organisation:
University College London
Department Name: Institute of Neurology
Abstract
Frontotemporal dementia (FTD) is a common cause of young onset dementia. Its effect on people of working age with young families represents a major health and economic burden on society. The only known risk factors for FTD at present are genetic with abnormalities (mutations) in three genes accounting for the majority of familial FTD, called progranulin, tau and chromosome 9 open reading frame 72. There are now promising avenues for treatment of these disorders but we still do not know when drugs should be started or how we should measure the response to treatment. This study investigates people who have genetic (inherited) FTD, including both people who have developed symptoms and also their first-degree relatives who are at 50% risk of carrying the genetic mutation and therefore developing symptoms in the future. By studying individuals who carry the disease mutation and are thus destined to develop the disease we can understand the development from the very earliest changes, which would be the best time to start any treatment whilst the person remains well. A pilot phase of the study between 2011 and 2014 has created a common platform for studying genetic FTD and a standardized testing protocol. This study builds on the pilot phase by creating a UK-wide study of genetic FTD (at University College London, University of Cambridge, University of Manchester and the University of Oxford) over the next five years. It is expected that 200 participants will be seen, being assessed three times in total. Study participants will have psychology testing (tests of memory, language, behaviour etc.), brain imaging, blood tests and spinal fluid collection (by lumbar puncture) in order to investigate the patterns of change in these different tests at different stages of the disorder. The key outcomes of the study are to (1) improve understanding of how brain systems break down in genetic FTD and how this breakdown relates to the underlying behavioural and cognitive symptoms, (2) develop markers which help identify the disease at its earliest stage, and (3) develop markers that allow the progression of the disease to be tracked. The eventual aim will be to use these markers in future clinical trials of drugs in genetic FTD. The results of this project will also lead to improvement in the recognition and diagnosis of genetic FTD as well as provide improved information about prognosis for patients and members of their family.
Technical Summary
Frontotemporal dementia (FTD) is a common cause of young onset dementia, approximately equal in frequency to Alzheimer's disease in people below the age of 65. Its effect on people of working age with young families represents a major health and economic burden on society. The only known risk factors for FTD are genetic, and around a third of FTD is familial. There are currently no treatments that can delay the onset or prevent the progression of genetic FTD but there are now potential disease-modifying therapies in development. However, there are still no biomarkers of genetic FTD that can confidently predict when disease-modifying therapy should be initiated or how the response to it should be monitored. By studying participants who carry a mutation and are thus destined to develop the disease we can explore the entire disease pathway, using mutation negative first-degree relatives as controls. A pilot study has created a common methodological platform to study genetic FTD. This follow-on study aims to capitalize on the work of the pilot, extending both the platform and expertise generated to a UK-wide study of genetic FTD. Specifically, we will establish a UK-wide familial FTD cohort of 200 participants which will (1) lead to greater understanding of the biological underpinning of the cognitive and behavioural deficits seen in FTD; (2) permit large-scale cohesive and integrated longitudinal biomarker studies of familial FTD with the specific remit of informing clinical trial design; and (3) provide a "readiness" cohort of patients for disease-modifying drug trials. The experimental plan includes longitudinal clinical and neuropsychological assessments, neuroimaging and both blood and spinal fluid sampling, with the key outcomes including improved understanding regarding the selective vulnerability of the specific neural systems affected in FTD, robust biomarkers of disease onset and progression, and estimation of sample sizes required for trials.
Planned Impact
The outcomes of UK GENFI will lead to improvement in the recognition and diagnosis of genetic FTD as well as provide improved prognostic information for patients and members of their family in the first instance. UK GENFI will provide a platform for clinical trials in genetic FTD, likely to occur in the next five years: finding a disease-modifying therapy in this disorder will be hugely beneficial both for the patient and their families at risk of the disorder, as well as improving the nation's health and wealth by altering a disease process that affects people generally of working age. Based on the current understanding of the pathophysiology of the disease, it is probable that effective interventions for genetic FTD due to progranulin mutations will become available either by repurposing or from novel agents. Rapid evaluation will support the G8 declaration of a treatment for dementia by 2025. This would have significant UK political benefit building on the UK lead internationally in the G8 dementia summit.
The outcomes of UK GENFI in terms of biomarkers of disease onset and progression will feed into pharmaceutical industry-led studies, providing the knowledge required to identify the primary and secondary outcomes used in clinical trials and the timing of when the trials should take place.
The outcomes of UK GENFI in terms of biomarkers of disease onset and progression will feed into pharmaceutical industry-led studies, providing the knowledge required to identify the primary and secondary outcomes used in clinical trials and the timing of when the trials should take place.
Organisations
- University College London (Lead Research Organisation)
- University of Milan (Collaboration)
- University of Coimbra (Collaboration)
- Karolinska Institute (Collaboration)
- August Pi i Sunyer Biomedical Research Institute (Collaboration)
- University of California, San Francisco (Collaboration)
- University of Laval (Collaboration)
- University of Limoges (Collaboration)
- Brescia Fatebenefratelli (Collaboration)
- Ludwig Maximilian University of Munich (LMU Munich) (Collaboration)
- University of Rouen (Collaboration)
- Carlo Besta Neurological Institute (Collaboration)
- University of Florence (Collaboration)
- University Hospital Donostia (Collaboration)
- University of Manchester (Collaboration)
- University of Lisbon (Collaboration)
- Erasmus MC (Collaboration)
- University of Brescia (Collaboration)
- UNIVERSITY OF CAMBRIDGE (Collaboration)
- McGill University (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Western University (Collaboration)
- UZ Leuven, Belgium (Collaboration)
- Pitié-Salpêtrière Hospital (Collaboration)
- University of Lille (Collaboration)
- University of Ulm (Collaboration)
- University of Toronto (Collaboration)
- University Hospital Tuebingen (Collaboration)
- Cardiff University (Project Partner)
Publications
Mahoney CJ
(2021)
Pathophysiology and Treatment of Non-motor Dysfunction in Amyotrophic Lateral Sclerosis.
in CNS drugs
Malpetti M
(2021)
Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes.
in Alzheimer's & dementia : the journal of the Alzheimer's Association
Manera AL
(2021)
MRI data-driven algorithm for the diagnosis of behavioural variant frontotemporal dementia.
in Journal of neurology, neurosurgery, and psychiatry
Marshall CR
(2019)
The functional neuroanatomy of emotion processing in frontotemporal dementias.
in Brain : a journal of neurology
Marshall CR
(2018)
Primary progressive aphasia: a clinical approach.
in Journal of neurology
Marshall CR
(2018)
Motor signatures of emotional reactivity in frontotemporal dementia.
in Scientific reports
Marshall CR
(2016)
C9orf72 mutations and the puzzle of cerebro-cerebellar network degeneration.
in Brain : a journal of neurology
Marshall CR
(2018)
Cardiac responses to viewing facial emotion differentiate frontotemporal dementias.
in Annals of clinical and translational neurology
McCarthy J
(2022)
Data-driven staging of genetic frontotemporal dementia using multi-modal MRI.
in Human brain mapping
Meda F
(2023)
Neurofilament light oligomers in neurodegenerative diseases: quantification by homogeneous immunoassay in cerebrospinal fluid
in BMJ Neurology Open
| Description | Development of a methodological framework of presymptomatic clinical trials |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Membership of a guideline committee |
| Description | Bluefield Project Grants - Developing a GENFI Biobank |
| Amount | $148,222 (USD) |
| Organisation | Bluefield Project |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 04/2016 |
| End | 04/2018 |
| 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 | 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 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. |
| 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 | GENFI2 |
| Organisation | August Pi i Sunyer Biomedical Research Institute |
| Department | Hospital Clinic of Barcelona |
| Country | Spain |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Brescia Fatebenefratelli |
| Country | Italy |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Carlo Besta Neurological Institute |
| Country | Italy |
| Sector | Public |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Erasmus MC |
| Country | Netherlands |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Karolinska Institute |
| Country | Sweden |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Ludwig Maximilian University of Munich (LMU Munich) |
| Department | University Clinic of Munich |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | McGill University |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Pitié-Salpêtrière Hospital |
| Country | France |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | UZ Leuven, Belgium |
| Country | Belgium |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University Hospital Donostia |
| Country | Spain |
| Sector | Hospitals |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University Hospital Tuebingen |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Brescia |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Cambridge |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Coimbra |
| Country | Portugal |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Florence |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Laval |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Lille |
| Country | France |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Limoges |
| Country | France |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Lisbon |
| Country | Portugal |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Manchester |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Milan |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Rouen |
| Country | France |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Toronto |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | University of Ulm |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | GENFI2 |
| Organisation | Western University |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | I have led this multicentre international biomarkers study of genetic frontotemporal dementia, which has been co-ordinated from UCL. |
| Collaborator Contribution | Partners are recruiting sites within the study. |
| Impact | Publications - Lancet Neurology 2015; Annals of Clinical and Translational Neurology 2016; Presentations - International Conference on FTD 2014; International Conference on FTD 2016 |
| Start Year | 2015 |
| Description | Annual FTD support group seminar 2016 |
| 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 | Seminar chaired by Jonathan Rohrer (supervisor) with talk by Elizabeth Gordon (PhD studentship) about her PhD work. |
| Year(s) Of Engagement Activity | 2016 |
| Description | British Science Festival |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk on young onset dementia and presymptomatic neurodegenerative disease highlighting the work of the GENFI project as part of the national British Science Festival - around 70 people attended with both a panel discussion and personal questions afterwards. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://thelittleboxoffice.com/bsa/event/view/26635 |
| Description | Contribution to online learning module about dementia (MOOC) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Videoed talk and written information provided for an online learning tool about dementia - highlighting my research and work on GENFI project. Over 10,000 people currently signed up for course (official start March 2016). |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://www.futurelearn.com/courses/faces-of-dementia |
| 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 | 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 | 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 | Patient and carer workshop - Ask the Doctor about FTD (Cambridge GENFI group - led by Prof James Rowe) |
| 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 | Standalone PPI group for FTD within the Rowe Lab in Cambridge. By inviting patients and their carers we looked at development of research studies and ethical issues within them. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Pint of Science 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | 120 attendees at a Pint of Science event describing our research work - lots of questions and engagement in interactive activities from the audience. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://pintofscience.co.uk/event/speechless |
| Description | Pint of Science 2022 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk on our FTD research work as part of the Pint of Science annual meeting in 2022 - to ~140 members of public. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Pint of Science Festival |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Around 100 people attended an event as part of the national Pint of Science Festival - discussion regarding young onset dementias and the work we are doing to find biomarkers and an evidence base for clinical trials - lots of questions and discussion afterwards and personal feedback from audience regarding how much they learned about the area. |
| Year(s) Of Engagement Activity | 2015 |
| 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 | Talk to event for UK magistrates |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Talk on frontotemporal dementia to a UK magistrates event to inform them about forensic nature of symptomatology of FTD and how our research is exploring this further - long discussion afterwards about how this might inform the work of magistrates, particularly in considering dementia as a underlying problem with people who have been involved in crimes and therefore may change their practice. |
| Year(s) Of Engagement Activity | 2015 |
| 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 |