Developing The Oxford Study for Biomarkers in Motor Neuron Disease (BioMOx): Capturing pre-symptomatic events and advancing clinical translation
Lead Research Organisation:
University of Oxford
Department Name: Clinical Neurosciences
Abstract
Motor neuron disease (MND) is a neurodegenerative condition in which the upper and lower motor neurons of the brain and spinal cord die prematurely. Also known as amyotrophic lateral sclerosis (ALS), it leads to progressive muscle weakness and wasting affecting the arms, legs, and speech and swallowing muscles. Involvement of the motor nerves supplying the respiratory muscles leads to death within three years of the onset of symptoms for half of patients. There is no effective treatment despite multiple drug trials over the last 20 years. About 5000 people suffer from MND in the UK, and many more are indirectly affected as their carers. It affects men and women and, although the peak incidence is in the early 60s, there is a wide age range.
Little is understood about why people develop MND. Whilst for most patients there is no clear single genetic reason for developing the disease, in a small number of patients there are multiple family members at risk due to single mutations or expansions in the genetic code. This project will study healthy volunteers who are known to carry genetic abnormalities linked to the development of MND, in order to try and capture the very earliest signs of nerve damage. Such changes might reveal new targets for preventative drug therapy, that then also have value in slowing progress in those with established disease. This part of the project will use one of only two very strong magnetic field (7 Tesla) MRI scanners in the UK in order to detect subtle changes in brain function and structure. Developments in MRI mean that it is now possible to study the spinal cord as well as the brain, and to look non-invasively at chemical substances within the tissue using a technique known as Magnetic Resonance Spectroscopy. This will be coupled to an extremely sensitive magnetoencephalography (MEG) scanner, which can detect patterns of brain motor nerve activity in real-time. This unique combination has the potential to unlock previously unrecognised changes in the brain and spinal cord of individuals long before symptoms appear, with the aim of identifying new targets for therapy, and new ways to monitor future therapeutic agents.
The symptoms of MND may initially not seem serious to the GP. Once referred to a hospital physician, making a diagnosis is not always straightforward without a diagnostic test. Currently diagnosis depends upon the opinion of an experienced neurologist and the exclusion of potential mimic disorders, which often involves lengthy investigations and a distressing period of uncertainty for patients. On average MND patients wait at least one year for a diagnosis. This delays the earlier administration of the only marginally disease-slowing medication, riluzole, and might be one reason that so many other drug trials have failed to show benefit. It is also precious time when individuals wish to maximise the quality of their remaining life. Finding reliable markers of disease activity in MND, called biomarkers, might help to speed up diagnosis, aid care-planning, and the assessment of new candidate drugs.
The Oxford Study for Biomarkers in MND (BioMOx) is a group of more than 60 MND patients, of all sub-types, who volunteered to be followed throughout their disease, undergoing tests every six months to try and identify biomarkers. Advanced MRI brain scans and analysis of spinal fluid and blood have revealed several candidates, and shown that their combination improves accuracy. This project will test these in people whose symptoms make MND a likely diagnosis, and in people with disease mimics, in order to see which biomarkers perform most reliably. It will also allow BioMOx to continue studying new cases of MND at regular intervals in order to understand why the pattern and speed of spread of initially isolated symptoms varies between individuals. This might help with the more efficient organisation of clinical trials, as well as effective care-planning.
Little is understood about why people develop MND. Whilst for most patients there is no clear single genetic reason for developing the disease, in a small number of patients there are multiple family members at risk due to single mutations or expansions in the genetic code. This project will study healthy volunteers who are known to carry genetic abnormalities linked to the development of MND, in order to try and capture the very earliest signs of nerve damage. Such changes might reveal new targets for preventative drug therapy, that then also have value in slowing progress in those with established disease. This part of the project will use one of only two very strong magnetic field (7 Tesla) MRI scanners in the UK in order to detect subtle changes in brain function and structure. Developments in MRI mean that it is now possible to study the spinal cord as well as the brain, and to look non-invasively at chemical substances within the tissue using a technique known as Magnetic Resonance Spectroscopy. This will be coupled to an extremely sensitive magnetoencephalography (MEG) scanner, which can detect patterns of brain motor nerve activity in real-time. This unique combination has the potential to unlock previously unrecognised changes in the brain and spinal cord of individuals long before symptoms appear, with the aim of identifying new targets for therapy, and new ways to monitor future therapeutic agents.
The symptoms of MND may initially not seem serious to the GP. Once referred to a hospital physician, making a diagnosis is not always straightforward without a diagnostic test. Currently diagnosis depends upon the opinion of an experienced neurologist and the exclusion of potential mimic disorders, which often involves lengthy investigations and a distressing period of uncertainty for patients. On average MND patients wait at least one year for a diagnosis. This delays the earlier administration of the only marginally disease-slowing medication, riluzole, and might be one reason that so many other drug trials have failed to show benefit. It is also precious time when individuals wish to maximise the quality of their remaining life. Finding reliable markers of disease activity in MND, called biomarkers, might help to speed up diagnosis, aid care-planning, and the assessment of new candidate drugs.
The Oxford Study for Biomarkers in MND (BioMOx) is a group of more than 60 MND patients, of all sub-types, who volunteered to be followed throughout their disease, undergoing tests every six months to try and identify biomarkers. Advanced MRI brain scans and analysis of spinal fluid and blood have revealed several candidates, and shown that their combination improves accuracy. This project will test these in people whose symptoms make MND a likely diagnosis, and in people with disease mimics, in order to see which biomarkers perform most reliably. It will also allow BioMOx to continue studying new cases of MND at regular intervals in order to understand why the pattern and speed of spread of initially isolated symptoms varies between individuals. This might help with the more efficient organisation of clinical trials, as well as effective care-planning.
Technical Summary
The aims of this project are:
1. To understand the earliest, pre-symptomatic changes in those carrying genetic mutations linked to MND, and how they link to spread of symptoms in affected individuals.
2. The refinement, validation and clinical translation of a multimodal biomarker diagnostic signature for MND.
The objectives of this project are:
1. The longitudinal study of pre-symptomatic individuals at risk of MND, particularly those carrying expansions of the C9ORF72 hexanucleotide repeat, as well as those with pathological SOD1, TARDBP and FUS gene mutations. It will uniquely combine the spatial resolution of very high-field 7 Tesla MRI of the brain and cord (including GABA and glutamate MR Spectroscopy, MRS), with the temporal resolution of cerebral magnetoencephalography (MEG) to explore changes in cortical neurophysiology that pre-date symptom onset, and with the hope of capturing the transition to disease in a small proportion of individuals. Incident MND cases will also be studied longitudinally in comparison.
2. To perform multivariate analysis of existing candidate neuroimaging, biofluid and eye-tracking biomarkers acquired through BioMOx, and to test performance in undiagnosed patients with focal weakness referred for electromyography and established mimics of MND ('disease controls') referred to me in the Oxford MND Centre.
The discovery that pre-symptomatic individuals have changes in brain function or structure compared to healthy individuals with no family history of MND profoundly influences the scientific thinking about this condition. As well as raising the possibility of preventative therapies for familial cases, there would be the hope of additional value when similar treatments are applied earlier to apparently sporadic cases. Such cases would be detected at an earlier stage through the development of a robust biomarker signature for MND, and the BioMOx resource offers a unique opportunity to develop this.
1. To understand the earliest, pre-symptomatic changes in those carrying genetic mutations linked to MND, and how they link to spread of symptoms in affected individuals.
2. The refinement, validation and clinical translation of a multimodal biomarker diagnostic signature for MND.
The objectives of this project are:
1. The longitudinal study of pre-symptomatic individuals at risk of MND, particularly those carrying expansions of the C9ORF72 hexanucleotide repeat, as well as those with pathological SOD1, TARDBP and FUS gene mutations. It will uniquely combine the spatial resolution of very high-field 7 Tesla MRI of the brain and cord (including GABA and glutamate MR Spectroscopy, MRS), with the temporal resolution of cerebral magnetoencephalography (MEG) to explore changes in cortical neurophysiology that pre-date symptom onset, and with the hope of capturing the transition to disease in a small proportion of individuals. Incident MND cases will also be studied longitudinally in comparison.
2. To perform multivariate analysis of existing candidate neuroimaging, biofluid and eye-tracking biomarkers acquired through BioMOx, and to test performance in undiagnosed patients with focal weakness referred for electromyography and established mimics of MND ('disease controls') referred to me in the Oxford MND Centre.
The discovery that pre-symptomatic individuals have changes in brain function or structure compared to healthy individuals with no family history of MND profoundly influences the scientific thinking about this condition. As well as raising the possibility of preventative therapies for familial cases, there would be the hope of additional value when similar treatments are applied earlier to apparently sporadic cases. Such cases would be detected at an earlier stage through the development of a robust biomarker signature for MND, and the BioMOx resource offers a unique opportunity to develop this.
Planned Impact
Several groups will benefit from the research proposed:
1. Patients and carers
Biomarker research such as that proposed, aimed at improving the diagnostic pathway and prognostication, will improve patients' and carers' quality of life. MND patients frequently report that the delay in their diagnosis was distressing and deprived them of time to enjoy remaining life before the onset of severe disability. They resent the necessity for lengthy therapeutic trials that rely on survival as the principal outcome measure. This proposal's development of biomarkers sensitive to early response (or lack) would mark a major step in reducing clinical trial length and permit faster rejection of ineffective candidates. There is an enormous desire among MND patients and their carers to take part in clinical research, despite knowing that it may not directly benefit them. They recognise that this is a vital way to develop therapeutic options, and those facing the particular challenge of a family history of MND stand to gain from understanding the earliest changes. There may well be benefits for patients with other neurodegenerative disorders through the discovery of mechanisms translatable across diseases.
2. Commercial sector
With common themes emerging in the pathogenesis of neurodegenerative disorders, such as protein misfolding, pharmaceutical companies are increasingly interested in MND as one that (regrettably) runs its course over a short time frame compared with Alzheimer's and Parkinson's disease. The need for validated biomarkers of disease activity has become the major obstacle which this research addresses. The development of the BioMOx framework for cohort studies in MND also provides valuable knowledge about natural history and stratification of patients for future trials Information on the earliest stages of disease development may help to maximise success of clinical trials in the longer term. Another area of gain for industry is in the 'repositioning' of their abandoned drug libraries, which depends critically on the biomarker development. The biotech industry also benefits through promotion and development of novel biomarker assays and diagnostic kits that may emerge from the work proposed.
3. Policy makers & funding agencies
Both benefit from greater understanding of MND patients' needs and concerns. I will continue to support the MND Association in lobbying Government about the high care burden of MND and the need for rapid access to support. I will continue to highlight the value of non-therapeutic clinical research as vital groundwork to therapeutic translation. The process of research ethics committee approval is currently prohibitive to all but large longitudinal studies, and frequently appears adversarial. This point was highlighted in my contribution to the 'National Strategy for MND' presented to Government, along with bureaucratic barriers around sharing of biofluid samples across international boundaries which is currently holding back wider collaborative possibilities.
4. UK economy and global science platform
In the longer-term the successful prevention or even just delay in the development of disability, for up to 10% of MND patients (the proportion with a genetic mutation identified at present), would substantially reduce loss of productive years for both patients and carers, and reduce the overall burden of long-term disability. The use of advanced brain scanning techniques, including one of only two UK 7 Tesla MRI scanners and MEG, towards the long-term goal of pre-symptomatic therapeutic intervention in this most challenging of diseases, provides a very strong example of the UK leading the way in cutting-edge research. This has the potential to encourage the brightest individuals to work in UK neuroscience, and supports wider efforts to make a scientific career attractive to those in full-time education.
1. Patients and carers
Biomarker research such as that proposed, aimed at improving the diagnostic pathway and prognostication, will improve patients' and carers' quality of life. MND patients frequently report that the delay in their diagnosis was distressing and deprived them of time to enjoy remaining life before the onset of severe disability. They resent the necessity for lengthy therapeutic trials that rely on survival as the principal outcome measure. This proposal's development of biomarkers sensitive to early response (or lack) would mark a major step in reducing clinical trial length and permit faster rejection of ineffective candidates. There is an enormous desire among MND patients and their carers to take part in clinical research, despite knowing that it may not directly benefit them. They recognise that this is a vital way to develop therapeutic options, and those facing the particular challenge of a family history of MND stand to gain from understanding the earliest changes. There may well be benefits for patients with other neurodegenerative disorders through the discovery of mechanisms translatable across diseases.
2. Commercial sector
With common themes emerging in the pathogenesis of neurodegenerative disorders, such as protein misfolding, pharmaceutical companies are increasingly interested in MND as one that (regrettably) runs its course over a short time frame compared with Alzheimer's and Parkinson's disease. The need for validated biomarkers of disease activity has become the major obstacle which this research addresses. The development of the BioMOx framework for cohort studies in MND also provides valuable knowledge about natural history and stratification of patients for future trials Information on the earliest stages of disease development may help to maximise success of clinical trials in the longer term. Another area of gain for industry is in the 'repositioning' of their abandoned drug libraries, which depends critically on the biomarker development. The biotech industry also benefits through promotion and development of novel biomarker assays and diagnostic kits that may emerge from the work proposed.
3. Policy makers & funding agencies
Both benefit from greater understanding of MND patients' needs and concerns. I will continue to support the MND Association in lobbying Government about the high care burden of MND and the need for rapid access to support. I will continue to highlight the value of non-therapeutic clinical research as vital groundwork to therapeutic translation. The process of research ethics committee approval is currently prohibitive to all but large longitudinal studies, and frequently appears adversarial. This point was highlighted in my contribution to the 'National Strategy for MND' presented to Government, along with bureaucratic barriers around sharing of biofluid samples across international boundaries which is currently holding back wider collaborative possibilities.
4. UK economy and global science platform
In the longer-term the successful prevention or even just delay in the development of disability, for up to 10% of MND patients (the proportion with a genetic mutation identified at present), would substantially reduce loss of productive years for both patients and carers, and reduce the overall burden of long-term disability. The use of advanced brain scanning techniques, including one of only two UK 7 Tesla MRI scanners and MEG, towards the long-term goal of pre-symptomatic therapeutic intervention in this most challenging of diseases, provides a very strong example of the UK leading the way in cutting-edge research. This has the potential to encourage the brightest individuals to work in UK neuroscience, and supports wider efforts to make a scientific career attractive to those in full-time education.
Organisations
- University of Oxford (Fellow, Lead Research Organisation)
- Instituto Paulo Gontijo (Collaboration)
- Euroimmun (Collaboration)
- University College London (Collaboration)
- Brazilian Association of Amyotrophic Lateral Sclerosis (ABRELA) (Collaboration)
- Friedrich Schiller University Jena (FSU) (Collaboration)
- University of Sydney (Collaboration)
- University of Miami (Collaboration)
- University of California, San Francisco (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- QUEEN MARY UNIVERSITY OF LONDON (Collaboration)
- INNOVATE UK (Collaboration)
- University of Sussex (Collaboration)
- University of Sheffield (Collaboration)
- Iron Horse Diagnostics, Inc. (Collaboration)
- University of Ulm (Collaboration)
- Cornell University (Collaboration)
- SWANSEA UNIVERSITY (Collaboration)
People |
ORCID iD |
| Martin Turner (Principal Investigator / Fellow) |
Publications
Filippi M
(2015)
Progress towards a neuroimaging biomarker for amyotrophic lateral sclerosis.
in The Lancet. Neurology
Wakerley BR
(2013)
Progressive dysphagia without dysarthria.
in Practical neurology
Bäumer D
(2014)
Progressive hemiparesis (Mills syndrome) with aphasia in amyotrophic lateral sclerosis.
in Neurology
Fernandes PM
(2015)
Progressive hemiparesis in a 75-year-old man.
in Practical neurology
Mitsumoto H
(2013)
Promoting clinical and patient-oriented research to identify the pathogenesis of amyotrophic lateral sclerosis.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Turner MR
(2016)
Psychiatric disorders prior to amyotrophic lateral sclerosis.
in Annals of neurology
Simon NG
(2014)
Quantifying disease progression in amyotrophic lateral sclerosis.
in Annals of neurology
Fabes J
(2017)
Quantitative FLAIR MRI in Amyotrophic Lateral Sclerosis.
in Academic radiology
Turner MR
(2013)
Reduced cancer incidence in Huntington's disease: record linkage study clue to an evolutionary trade-off?
in Clinical genetics
Tu S
(2018)
Regional thalamic MRI as a marker of widespread cortical pathology and progressive frontotemporal involvement in amyotrophic lateral sclerosis.
in Journal of neurology, neurosurgery, and psychiatry
Van Der Kleij LA
(2015)
Regionality of disease progression predicts prognosis in amyotrophic lateral sclerosis.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Turner MR
(2016)
Romberg's test no longer stands up.
in Practical neurology
DiPALS Writing Committee
(2015)
Safety and efficacy of diaphragm pacing in patients with respiratory insufficiency due to amyotrophic lateral sclerosis (DiPALS): a multicentre, open-label, randomised controlled trial.
in The Lancet. Neurology
Webb AJ
(2015)
Seasonal variation in Guillain-Barré syndrome: a systematic review, meta-analysis and Oxfordshire cohort study.
in Journal of neurology, neurosurgery, and psychiatry
Mattsson N
(2016)
Selective vulnerability in neurodegeneration: insights from clinical variants of Alzheimer's disease.
in Journal of neurology, neurosurgery, and psychiatry
Kelleher J
(2016)
Spread of pedigree versus genetic ancestry in spatially distributed populations.
in Theoretical population biology
Turner MR
(2014)
Swallowing and oropharyngeal dysphagia.
in Clinical medicine (London, England)
Turner MR
(2017)
Sweet food preference in amyotrophic lateral sclerosis.
in Practical neurology
Turner Martin
(2016)
TEACHING NEUROIMAGES: HYPOMETABOLISM OF THE PRIMARY MOTOR CORTEX IN PRIMARY LATERAL SCLEROSIS: THE STRIPE SIGN
in NEUROLOGY
Turner M
(2016)
Teaching Neuroimages: Hypometabolism of the primary motor cortex in primary lateral sclerosis: The stripe sign.
in Neurology
Proudfoot M
(2016)
The ALSFRS as an outcome measure in therapeutic trials and its relationship to symptom onset.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Martin S
(2017)
The benefit of evolving multidisciplinary care in ALS: a diagnostic cohort survival comparison.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Tendler BC
(2022)
The Digital Brain Bank, an open access platform for post-mortem imaging datasets.
in eLife
Turner MR
(2015)
The expanding syndrome of amyotrophic lateral sclerosis: a clinical and molecular odyssey.
in Journal of neurology, neurosurgery, and psychiatry
Gray E
(2015)
The longitudinal cerebrospinal fluid metabolomic profile of amyotrophic lateral sclerosis.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Turner M
(2019)
The reunification of amyotrophic lateral sclerosis
in Journal of Neurology, Neurosurgery & Psychiatry
Turner MR
(2015)
The standard of care in amyotrophic lateral sclerosis: a centralised multidisciplinary clinic encounter sets a new benchmark for a uniquely challenging neurodegenerative disorder.
in Journal of neurology, neurosurgery, and psychiatry
Turner MR
(2017)
The tough body at the epicentre of amyotrophic lateral sclerosis.
in Journal of neurology, neurosurgery, and psychiatry
Menke RAL
(2018)
The two-year progression of structural and functional cerebral MRI in amyotrophic lateral sclerosis.
in NeuroImage. Clinical
Turner MR
(2013)
The wisdom of neurologists.
in Practical neurology
Eisen A
(2014)
Tools and talk: an evolutionary perspective on the functional deficits associated with amyotrophic lateral sclerosis.
in Muscle & nerve
Feneberg E
(2018)
Towards a TDP-43-Based Biomarker for ALS and FTLD.
in Molecular neurobiology
Thompson AG
(2018)
UFLC-Derived CSF Extracellular Vesicle Origin and Proteome.
in Proteomics
Turner MR
(2013)
Unilateral leukonychia and hair depigmentation in multifocal motor neuropathy.
in Neurology
Kent L
(2013)
Unmasking of incipient amyotrophic lateral sclerosis by botulinum toxin therapy.
in Journal of neurology
Balendra R
(2015)
Use of clinical staging in amyotrophic lateral sclerosis for phase 3 clinical trials
in Journal of Neurology, Neurosurgery & Psychiatry
Hartung V
(2014)
Voxel-based MRI intensitometry reveals extent of cerebral white matter pathology in amyotrophic lateral sclerosis.
in PloS one
Turner MR
(2015)
What does imaging reveal about the pathology of amyotrophic lateral sclerosis?
in Current neurology and neuroscience reports
Teunissen CE
(2018)
White paper by the Society for CSF Analysis and Clinical Neurochemistry: Overcoming barriers in biomarker development and clinical translation.
in Alzheimer's research & therapy
Stagg CJ
(2013)
Whole-brain magnetic resonance spectroscopic imaging measures are related to disability in ALS.
in Neurology
Menke RA
(2014)
Widespread grey matter pathology dominates the longitudinal cerebral MRI and clinical landscape of amyotrophic lateral sclerosis.
in Brain : a journal of neurology
| Description | ABN Clinical Research Training Fellowship Chair |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Continued development and leadership of ABN's Clinical Research Training Fellowship scheme in Clinical Neuroscience. Associated workshops at annual ABN meeting for trainees interested in an academic neurology career. |
| Description | MRC Clinical Research Training Fellows Day |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Presentation on career pathways in clinical academia. |
| Description | MRC Training and Careers Group |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Impact | Senior Clinical Fellow representative for committee concerned with all aspects of medical research funding and career development. |
| Description | NHS Direct patient information on MND |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | Re-wrote and updated the NHS Direct patient information on MND. |
| URL | http://www.nhs.uk/conditions/Motor-neurone-disease/Pages/Introduction.aspx |
| Description | NIV withdrawal UK guidelines |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Impact | Audit and guideline development for the withdrawal of NIV in ALS patients. |
| Description | Sheffield BMedSci presentation |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Presentation to medical students undertaking intercalated BMedSci on benefits of a research career. |
| Description | The Neuroimaging Symposium in Amyotrophic lateral sclerosis (ALS) (NISALS) |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| Impact | I convened the first meeting in 2010, now annual, of global researchers studying ALS using neuroimaging. Guidelines were developed and published in Lancet Neurology PMID:21511189. Second meeting in Jena Germany 2011 has laid foundation for standardization and harmonization of MRI data across centres. Meeting in Miami developing multi-centre collaborative MRI study. Meetings in Milan, Leuven, Orlando and Dublin have developed multi-centre projects and Governance framework. |
| URL | http://europepmc.org/abstract/MED/21511189 |
| Description | BRC Biomarker Theme |
| Amount | £106,000 (GBP) |
| Funding ID | Biomarker theme |
| Organisation | Oxford University Hospitals NHS Foundation Trust |
| Department | NIHR Oxford Biomedical Research Centre |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 03/2012 |
| End | 03/2017 |
| Description | Brain PhD Entry Fellowship Malcolm Proudfoot |
| Amount | £53,000 (GBP) |
| Organisation | Guarantors of Brain |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2013 |
| End | 08/2014 |
| Description | Confirming a set of newly identified non-coding RNA biomarkers for Amyotrophic Lateral Sclerosis and investigating their functional relevance to the disease |
| Amount | £158,299 (GBP) |
| Funding ID | Hafezparast/Apr18/861-791 |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2018 |
| End | 08/2020 |
| Description | Emily Feneberg CRTF |
| Amount | £132,933 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 10/2017 |
| End | 09/2019 |
| Description | Families for the Treatment of Hereditary MND (FaTHoM) study day |
| Amount | £4,000 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2017 |
| End | 04/2017 |
| Description | Ice Bucket Challenge |
| Amount | £800,000 (GBP) |
| Funding ID | AMBRoSIA |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2016 |
| End | 04/2021 |
| Description | John Fell Fund |
| Amount | £54,976 (GBP) |
| Organisation | University of Oxford |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 05/2015 |
| End | 04/2016 |
| Description | MNDA small grants |
| Amount | £3,000 (GBP) |
| Funding ID | PLS Day |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2015 |
| End | 10/2015 |
| Description | MNDA small grants |
| Amount | £1,500 (GBP) |
| Funding ID | Athleticism in ALS meeting |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2014 |
| End | 03/2014 |
| Description | MNDA small grants |
| Amount | £10,000 (GBP) |
| Funding ID | MSD Reader |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2015 |
| End | 06/2015 |
| Description | Malcolm Proudfoot CRTF |
| Amount | £134,391 (GBP) |
| Funding ID | 104369/Z/14/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2014 |
| End | 07/2016 |
| Description | Neurofilament round robin |
| Amount | £200,000 (GBP) |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 12/2017 |
| End | 11/2018 |
| Description | Thierry Latran Foundation 4th Project Call |
| Amount | £100,100 (GBP) |
| Funding ID | PROMISES |
| Organisation | Thierry Latran Foundation |
| Sector | Charity/Non Profit |
| Country | France |
| Start | 12/2012 |
| End | 12/2014 |
| Title | ALS biomarkers |
| Description | Longitudinal MRI, CSF and blood from large group of ALS patients |
| Type Of Material | Biological samples |
| Year Produced | 2012 |
| Provided To Others? | Yes |
| Impact | Candidate MRI and biofluid biomarkers. Major finding of NfL as a prognostic biomarker through sample sharing with QMUL |
| Title | EV extraction from CSF |
| Description | UFLC method offers greater yield than conventional UC from CSF. |
| Type Of Material | Technology assay or reagent |
| Year Produced | 2017 |
| Provided To Others? | Yes |
| Impact | Methods paper in submission |
| Title | Jena MRI repository |
| Description | Repository for multi-centre MRI data in MND. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2012 |
| Provided To Others? | Yes |
| Impact | Quality control process for T1-weighted MRIs for VBM analysis. Platform for future multi-centre meta-analyses. |
| URL | http://www.nisals.org |
| Title | Pathological TDP43 C-terminal peptide identification |
| Description | Identification of novel peptide fragments of TDP43 which identify ALS and some forms of Alzheimer's with high specificity in post mortem tissue. |
| Type Of Material | Technology assay or reagent |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | Local University patent application and publication |
| Title | AMBRoSIA |
| Description | A Multi-centre Biomarker Resource Strategy in ALS. Oxford, QMUL and Sheffield collecting and storing biofluid samples from 300 patients and 450 controls over 5 years (MNDA-funded). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2019 |
| Provided To Others? | No |
| Impact | Infrastructure and governance nearing completion prior to first recruitment April 2017. |
| Title | NiSALS MRI repository |
| Description | Neuroimaging Society in ALS (NiSALS). Founded by me in 2010 to bring together academic centres involved in MND imaging. Development of a secure repository for anonymised MRI scans in Jena, Germany to facilitate multi-centre studies. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | Multi-centre study of DTI in MND (PMID 26746186) |
| Title | Oxford Biomarker Bank |
| Description | Ethical approval for extra sample of CSF and blood from patients having routine investigations, to use as disease controls in biomarker studies. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | Access to disease controls for ALS biomarker development, including contribution to standardisation efforts. New collaborations with local groups increases sample collecting infrastructure. |
| Description | AMBRoSIA grant bid |
| Organisation | Queen Mary University of London |
| Department | School of Engineering and Materials Science |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Application writing and expertise. Collection of ALS neurochemical samples for biomarker discovery. |
| Collaborator Contribution | Harmonisation of, and multi-site collection of ALS neurochemical samples for biomarker discovery. |
| Impact | SOPs for sample collection |
| Start Year | 2015 |
| Description | AMBRoSIA grant bid |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Application writing and expertise. Collection of ALS neurochemical samples for biomarker discovery. |
| Collaborator Contribution | Harmonisation of, and multi-site collection of ALS neurochemical samples for biomarker discovery. |
| Impact | SOPs for sample collection |
| Start Year | 2015 |
| Description | Brazilian ALS Associations |
| Organisation | Brazilian Association of Amyotrophic Lateral Sclerosis (ABRELA) |
| Country | Brazil |
| Sector | Charity/Non Profit |
| PI Contribution | Visit to share ideas about ALS care and research |
| Collaborator Contribution | Sharing of ideas. Platform for discussions. Plans for future joint grants. |
| Impact | None to date |
| Start Year | 2014 |
| Description | Brazilian ALS Associations |
| Organisation | Instituto Paulo Gontijo |
| Country | Brazil |
| Sector | Charity/Non Profit |
| PI Contribution | Visit to share ideas about ALS care and research |
| Collaborator Contribution | Sharing of ideas. Platform for discussions. Plans for future joint grants. |
| Impact | None to date |
| Start Year | 2014 |
| Description | CSF DPR assay |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of CSF for assay testing |
| Collaborator Contribution | Provision of antibody to allow us to set up local electrochemiluminescence assay. |
| Impact | Initial advice on assay set-up and timetable for antibody delivery |
| Start Year | 2018 |
| Description | Cholesterol metabolomics |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of serum and CSF from ALS patients and healthy controls. |
| Collaborator Contribution | Cholesterol metabolite analysis as potential biomarkers. |
| Impact | Paper published 2016. |
| Start Year | 2013 |
| Description | EPISWITCH |
| Organisation | Innovate UK |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Provision of clinically-characterised blood samples from ALS patients and controls. |
| Collaborator Contribution | Clinical research fellow funding |
| Impact | Ongoing |
| Start Year | 2015 |
| Description | Eye-tracking |
| Organisation | University of Oxford |
| Department | Nuffield Department of Clinical Neurosciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | DPhil student supervision. Expertise in ALS. Patients with ALS. |
| Collaborator Contribution | Expertise and equipment |
| Impact | Data presented at international and patient-based meetings. Review of field published in JAMA Neurology 2011. Paper in PLoS ONE on novel TMT using eye-tracker 2014. Paper in ALS-FTD on longitudinal analysis in ALS 2015. |
| Start Year | 2009 |
| Description | GENFI |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of MRI and clinical data on FTD patients. |
| Collaborator Contribution | Multi-centre pooling of FTD data. |
| Impact | Harmonisation of data-collection |
| Start Year | 2015 |
| Description | Hospital record linkage studies |
| Organisation | University of Oxford |
| Department | Nuffield Department of Primary Care Health Sciences |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Knowledge and hypothesis relating to ALS and neurological disease more widely |
| Collaborator Contribution | Access to and statistical interrogation of Oxford and England Hospital Record Databases |
| Impact | Published studies in ALS relating to cancer 2010, head injury 2010 and cardiovascular fitness 2011, autoimmune disorders 2014, cerebrovascular injury 2015, psychiatric disorders 2016. Published study in Huntington's relating to cancer 2013. |
| Start Year | 2009 |
| Description | MEG |
| Organisation | University of Oxford |
| Department | Oxford Centre for Human Brain Activity (OHBA) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of DPhil student and supervision. Integration with BioMOx ALS biomarker programme. |
| Collaborator Contribution | Expertise and equipment, co-supervision of student. |
| Impact | Review paper on MEG 2014. First-in-ALS paper on beta band changes (HBM 2016). |
| Start Year | 2012 |
| Description | MRI network modelling |
| Organisation | Cornell University |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | Sharing of structural MRI data and clinical expertise |
| Collaborator Contribution | Network modelling of MRI data in understanding spread of pathology |
| Impact | Joint senior author publication in Neuroimage 2021 |
| Start Year | 2016 |
| Description | MRI network modelling |
| Organisation | University of California, San Francisco |
| Department | Radiology and Biomedical Imaging at UCSF |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | Sharing of structural MRI data and clinical expertise |
| Collaborator Contribution | Network modelling of MRI data in understanding spread of pathology |
| Impact | Joint senior author publication in Neuroimage 2021 |
| Start Year | 2016 |
| Description | NISALS |
| Organisation | Friedrich Schiller University Jena (FSU) |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | Establishment of an international consortium of neuroscientists focused on neuroimaging in ALS. Organise annual meetings. |
| Collaborator Contribution | Online repository for multi-site MRI data for multi-site analyses. |
| Impact | Consensus statementas on neuroimaging in ALS (Lancet Neurology 2011 and 2015). Multi-site analysis of T1 and DTI data (paper on DTI 2016). Paper on clinical correlations 2016 |
| Start Year | 2010 |
| Description | Neurofilaments |
| Organisation | Euroimmun |
| Country | Germany |
| Sector | Private |
| PI Contribution | Provision of longitudinal serum and CSF samples from ALS patients and controls |
| Collaborator Contribution | ELISA-based assay for neurofilaments as potential biomarker |
| Impact | Papers on CSF and serum NfL as prognostic marker, and link to DTI metrics 2015. Multi-centre validation studies (papers 2016). Planned commercial assay study with IHD. |
| Start Year | 2013 |
| Description | Neurofilaments |
| Organisation | Iron Horse Diagnostics, Inc. |
| Country | United States |
| Sector | Private |
| PI Contribution | Provision of longitudinal serum and CSF samples from ALS patients and controls |
| Collaborator Contribution | ELISA-based assay for neurofilaments as potential biomarker |
| Impact | Papers on CSF and serum NfL as prognostic marker, and link to DTI metrics 2015. Multi-centre validation studies (papers 2016). Planned commercial assay study with IHD. |
| Start Year | 2013 |
| Description | Neurofilaments |
| Organisation | Queen Mary University of London |
| Department | Clinical Research Facilities |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of longitudinal serum and CSF samples from ALS patients and controls |
| Collaborator Contribution | ELISA-based assay for neurofilaments as potential biomarker |
| Impact | Papers on CSF and serum NfL as prognostic marker, and link to DTI metrics 2015. Multi-centre validation studies (papers 2016). Planned commercial assay study with IHD. |
| Start Year | 2013 |
| Description | Neurofilaments |
| Organisation | University of Ulm |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | Provision of longitudinal serum and CSF samples from ALS patients and controls |
| Collaborator Contribution | ELISA-based assay for neurofilaments as potential biomarker |
| Impact | Papers on CSF and serum NfL as prognostic marker, and link to DTI metrics 2015. Multi-centre validation studies (papers 2016). Planned commercial assay study with IHD. |
| Start Year | 2013 |
| Description | Post mortem MRI |
| Organisation | University of Oxford |
| Department | Oxford Centre for Functional MRI of the Brain (FMRIB) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Grant application and provision of clinically-characterised MRIs and post mortem tissue from BioMOx cohort. |
| Collaborator Contribution | PM MRI sequence development and histological correlation |
| Impact | Development of tools for the cross-correlation of MRI and histopathological material. |
| Start Year | 2013 |
| Description | Target Discovery Institute - Kessler Lab |
| Organisation | University of Oxford |
| Department | Target Discovery Institute (TDI) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Provision of deep-phenotyped biofluid samples in MND. |
| Collaborator Contribution | Proteomics expertise. |
| Impact | CSF chitinases in ALS (Annals of Neurology 2018). CSF EV proteome paper (Proteomics 2018). |
| Start Year | 2014 |
| Description | University of Sydney Visiting Post-doctoral Fellows |
| Organisation | University of Sydney |
| Department | Brain and Mind Research Institute |
| Country | Australia |
| Sector | Academic/University |
| PI Contribution | Help with writing applications to Australian funders for visiting post-doctoral fellows in ALS neuroimaging. |
| Collaborator Contribution | Selection of candidates and initiation of applications to Australian funders for visiting post-doctoral fellows in ALS neuroimaging. |
| Impact | Publications on research led by the visiting fellow; Training of fellow in neuroimaging analysis skills. |
| Start Year | 2015 |
| Description | miRNAs in ALS |
| Organisation | University of Sussex |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Intellectual contribution to grant application. Provision of clinically-characterised CSF and blood samples for miRNA biomarker discovery. |
| Collaborator Contribution | Technical expertise in miRNA analysis; Contribution to post-doctoral salary through grant ward from MNDA 2018. |
| Impact | Ongoing |
| Start Year | 2015 |
| Description | pre-FALS |
| Organisation | University of Miami |
| Department | Department of Neurology |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | MEG and MRI study of pre-symptomatic carriers of ALS genetic mutations. |
| Collaborator Contribution | Provision of pre-counselled and pre-tested pre-symptomatic ALS genetic mutation carriers. |
| Impact | Paper on DTI and R-FMRI 2016. MEG beta band changes paper (HBM) 2016. |
| Start Year | 2012 |
| Title | METHODS FOR DIAGNOSING MOTOR NEURON DISEASES |
| Description | The invention relates to methods for determining whether a subject is afflicted with a motor neuron disease, the method comprising conducting an analysis of cerebrospinal fluid and/or plasma, measuring the level of one or more sterol/oxysterol analytes, and comparing these to reference values. Further, the invention relates to methods of identifying agents suitable for the treatment of MND, and monitoring the progress of the disease. |
| IP Reference | US2019310267 |
| Protection | Patent / Patent application |
| Year Protection Granted | 2019 |
| Licensed | No |
| Impact | Local focus on lipids as presymptomatic biomarkers in ALS. |
| Title | Neurofilaments |
| Description | Neurofilament (CSF and serum) as a diagnostic, predictive and pharmacodynamic biomarker in MND. |
| Type | Diagnostic Tool - Non-Imaging |
| Current Stage Of Development | Early clinical assessment |
| Year Development Stage Completed | 2017 |
| Development Status | Under active development/distribution |
| Impact | International workshops for harmonisation of efforts. ALS Association grant for round robin standardisation activity. Multiple publications. |
| Description | ABN Clinical Research Advisory Committee |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Discussion of ABN strategy and funding for clinical research in neurology. Raised personal profile and chance to shape future research agenda. |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | ACE Symposium |
| 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 | Organised workshop to consider Athleticism, Cardiovascular risk and Exercise in ALS patients. Planned studies by attendees |
| Year(s) Of Engagement Activity | 2014 |
| Description | ALS Canada |
| 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 | Advice to major ALS/MND research-awarding body. |
| Year(s) Of Engagement Activity | 2018 |
| Description | ALS Canada webinar |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | ALS Canada live broadcast presentation on ALS/MND biomarkers. |
| Year(s) Of Engagement Activity | 2018 |
| Description | ALSRG |
| 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 | Discussions around clinical trials and funding for ALS research Planned meeting to redesign clinical trials in ALS |
| Year(s) Of Engagement Activity | 2014 |
| Description | ANZAN meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited speaker on MND care and management, biomarker and therapy development and incidental findings in MRI research. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Asia-Pacific FTD-MND 2016 & 2020 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talks on the cerebral lesion in ALS and how I manage ALS 2016; Talk on "Who gets ALS?" 2020 |
| Year(s) Of Engagement Activity | 2015,2020 |
| Description | BBC Radio 5 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 | Contribution to discussion and debate on unproven treatment use in MND. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Biogen Idec Imaging Advisory Panel |
| 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 | Expert view on use of neuroimaging for ALS biomarkers Company keen to pursue |
| Year(s) Of Engagement Activity | 2014 |
| Description | Brazilian ALS Outreach |
| 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 | Invited presentations to ALS neurologists and researchers in Brazil (Sao Paulo and Curitiba) New collaborations planned, and advice on setting up infrastructure for ALS care and research in Brazil. |
| Year(s) Of Engagement Activity | 2014 |
| Description | British Geriatrics Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Update on MND care and research |
| Year(s) Of Engagement Activity | 2016 |
| Description | CSF Society |
| 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 | Collaboration and standardisation on all aspects of CSF analysis |
| Year(s) Of Engagement Activity | 2016 |
| Description | Chancellors Court of Benefactors meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Showcasing departmental research activity, in my case MND developments, with view to major funding donations. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Cytokinetics Tirasemtiv trial |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Enrollment of participants in Phase IIb study. Enhancement of Oxford's status as clinical trials centre in ALS. Increased recruitment to clinical research more widely. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Edinburgh Advanced Neurology Course |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | Keynote/Invited Speaker |
| Geographic Reach | National |
| Primary Audience | Health professionals |
| Results and Impact | Invited discussant for clinicopathological conference concerning rare case of ALS. Other talks on clinical neurological topics more widely. Increased profile as ALS opinion leader. CPD in general neurology |
| Year(s) Of Engagement Activity | 2013 |
| Description | European Academy of Neurology ALS Workshop 2018 |
| 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 | Co-organiser of workshop on ALS diagnostics, including neuroimaging. |
| Year(s) Of Engagement Activity | 2018 |
| Description | FTD UK |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on CSF biomarkers in ALS. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.ftduk.org |
| Description | FTD UK meeting |
| 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 | Update on latest research and overlap with MND. 2017: led debate on genetic testing of all new diagnoses |
| Year(s) Of Engagement Activity | 2016,2017 |
| Description | Families for the Treatment of Hereditary MND (FaTHoM) initiative 2017 & 2019 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Workshops to educate families linked to genetic forms of MND and FTD in relation to local research initiatives and future therapies. |
| Year(s) Of Engagement Activity | 2017,2019 |
| Description | Fighting For Life |
| 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 | Performance of play 'Fighting For Life' at Sue Ryder Hospice after which I took part in expert Q&A on MND with audience. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Forefront ALS Research Programme Review |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Expert external review panel member for University of Sydney flagship research programme in neurodegenerative disorders. |
| Year(s) Of Engagement Activity | 2018 |
| Description | GP Study Day |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Educational day for GPs on neurology including MND |
| Year(s) Of Engagement Activity | 2016 |
| Description | Gastprofessorship Ulm University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited professorship to share ideas around MND research and biomarker development. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Genetech consultancy |
| 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 | Consultancy around biomarker choice for future trials in MND, in particular the use of imaging. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Gloucester Branch MNDA talk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Research update |
| Year(s) Of Engagement Activity | 2016 |
| Description | ICCN meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited presentation on neuroimaging biomarkers in ALS Increased awareness and profile-raising |
| Year(s) Of Engagement Activity | 2014 |
| Description | Incidental findings in MRI research |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Benchmarking workshop around management and ethical issues with IFs in imaging research. Held jointly with WT Centre for Ethics & Humanities. |
| Year(s) Of Engagement Activity | 2017 |
| Description | International Conference on FTD |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Presentation and live webinar to FTD carers and patients on the overlap of ALS and FTD. |
| Year(s) Of Engagement Activity | 2018 |
| Description | JNNP Editorial Board |
| 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 | Commissioning Editor and Editorial Board member for JNNP. |
| Year(s) Of Engagement Activity | 2015,2016,2017 |
| URL | http://www.jnnp.com |
| Description | King's MSc Neuroscience |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Reviewed marking scheme and course material. Educational value in understanding how MSc courses run in other institutions |
| Year(s) Of Engagement Activity | 2013 |
| Description | Kings Neuroscience / MND seminar |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited talk on 'New frontiers in ALS research'. Invited debate on role of tracheostomy in ALS. Raised personal research profile. |
| Year(s) Of Engagement Activity | 2013,2014 |
| Description | Lady Edith Wolfson Programme Day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Presentation of achievements and ongoing work in MND biomarker research to major donor to MND Association who have part funded my Fellowships. |
| Year(s) Of Engagement Activity | 2018 |
| Description | MA Healthcare MND Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on MND biomarker and therapy development. |
| Year(s) Of Engagement Activity | 2018 |
| Description | MND Association AGM |
| 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 | Invited Keynote presentation on MND biomarker progress. |
| Year(s) Of Engagement Activity | 2018 |
| Description | MND presentation to University Hospital Birmingham neurologists |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on the evolving needs of the MND clinic and progress in biomarker development |
| Year(s) Of Engagement Activity | 2017 |
| Description | MND professionals study day |
| 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 | Day course for allied health professionals: 'New Horizons in MND care and management' from Oxford clinic perspective, including genetics and difficult case discussions. |
| Year(s) Of Engagement Activity | 2017 |
| Description | MNDA Biomedical Research Advisory Panel |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion and scoring of grant applications Helping to shape national MND research |
| Year(s) Of Engagement Activity | 2012,2013,2014,2015 |
| URL | http://www.mndassociation.org |
| Description | MNDA Care Centre Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Annual meeting of care centre directors, co-directors and coordinators to review best practice and future intiatives. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013,2014,2015 |
| Description | MNDA Donor dinner |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Research presentations and discussion with patients and MNDA donors |
| Year(s) Of Engagement Activity | 2016,2017 |
| Description | MNDA Legacy Day |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Overview of Oxford MND Clinic and research activities |
| Year(s) Of Engagement Activity | 2016 |
| Description | MNDA Legacy Day |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Outline of Oxford MND Centre care and research |
| Year(s) Of Engagement Activity | 2016 |
| Description | MNDA Major donor presentations |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Type Of Presentation | Keynote/Invited Speaker |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Annual MND Association-organised Royal Society presentation of my ALS research to major donors. Visits to Oxford MND Care & Research Centre - tour of labs 2012, 2013. Lady Edith Wolfson Day at Sheffield 2013. Interest in continued funding of ALS research. |
| Year(s) Of Engagement Activity | 2010,2011,2012,2013 |
| Description | MNDA PRISM event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | Annual meeting of philanthropic group interested in supporting MND research. |
| Year(s) Of Engagement Activity | 2017 |
| Description | MNDA regional patient meetings |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Annual regional branch meetings to 25-50 patient and carer attendees. Presented biomarker research progress. 2011 Oxfordshire branch 2011 National Spring Conference (Cambridge) 2012 Cambridgeshire branch 2013 Oxford, Gloucester & Reading West branches 2013 Reading 2015 Oxfordshire Improved awareness and hope for patients and carers. Offers to participate in research. |
| Year(s) Of Engagement Activity | 2011,2012,2013,2015 |
| Description | Motor system workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Inter-disciplinary workshop to look at collaboration in study of motor system in health and disease |
| Year(s) Of Engagement Activity | 2016 |
| Description | My Name'5 Doddie Scientific Advisory Panel |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | Became regular part of expert review panel for Doddie Weir MND Fund to advise on grant calls. |
| Year(s) Of Engagement Activity | 2018,2019,2020 |
| Description | Neuraltus Pharmaceuticals |
| 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 | Expert advice on unmet clinical needs of ALS patients. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Neurology Today |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Interview on pre-symptomatic MND study, and wider use of neurofilament assays. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Omnia-Med Study Day |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk on MND diagnosis and management. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Ontario Brain Institute |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited to review 5-year programme and make recommendations for improvement. Increased awareness of other international studies and personal profile-raising as opinion leader in field. |
| Year(s) Of Engagement Activity | 2013,2014,2015,2016,2017,2018,2019 |
| URL | http://www.ondri.ca |
| Description | Oxford Neuroscience Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Talk on Biomarkers in ALS |
| Year(s) Of Engagement Activity | 2015 |
| Description | Oxford University Brain Diaries event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Presentation on MND and local research initiatives. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Oxfordshire Branch MNDA meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Post-doctoral scientists Liz Gary presented our CSF biomarker work. |
| Year(s) Of Engagement Activity | 2018 |
| Description | P-CNS |
| 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 | Day workshop to educate GPs about neurological symptoms |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.p-cns.org.uk |
| Description | PLS Day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | 1st UK event for sufferers with Primary Lateral Sclerosis, a rare form of MND. Opportunity for patients and carers to hear latest understanding of this condition and research. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Palliative Care Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited lecture on 'Palliative Care issues in MND' to 150 Palliative Care professionals. Interest and awareness of MND-related issues. |
| Year(s) Of Engagement Activity | 2009,2016 |
| Description | Pre-NI |
| 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 | Workshop on pre-symptomatic studies in neurodegeneration. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Primary Lateral Sclerosis Study Day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Organiser of 1st UK PLS day for carers and practitioners. |
| Year(s) Of Engagement Activity | 2016 |
| Description | RCN |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Royal College of Nursing presentation on History of MND. |
| Year(s) Of Engagement Activity | 2015 |
| Description | RCP Advanced Medicine Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Goulstonian Lecture on ALS biomarkers. |
| Year(s) Of Engagement Activity | 2015 |
| Description | RSM Regional Study Day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Update on MND diagnosis. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Richard Doll Society talk |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | Presentation on MND: understanding of pathogenesis and biomarker development |
| Year(s) Of Engagement Activity | 2017 |
| Description | SENA |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on latest research and management in ALS to neurologists |
| Year(s) Of Engagement Activity | 2015 |
| Description | School in Cognitive Neuroscience |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Talk on brain in ALS and FTD. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Spanish Society of Neurology |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation of biomarker work Advice sought from me on setting up similar research |
| Year(s) Of Engagement Activity | 2013 |
| Description | TRC-D PET |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop on application of new PET tracers to neurodegenerative disorders |
| Year(s) Of Engagement Activity | 2015 |
| Description | Taubman Institute Lectureship |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited presentation on ALS biomarkers Stimulate local research and advice on logistics. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Ulm Neuroscience Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation on ALS biomarkers. |
| Year(s) Of Engagement Activity | 2014 |
| Description | University of Sussex MND mini-symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited presentation on imaging in MND research, with wider topic coverage and debate. |
| Year(s) Of Engagement Activity | 2017 |
| Description | www.oxfordmnd.net |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Development and maintenance of website for Oxford MND Centre. Increased awareness of Centre's activity, information for patients about Care & Research. |
| Year(s) Of Engagement Activity | 2008,2009,2010,2011,2012,2013,2014 |
| URL | http://www.oxfordmnd.net |