Biomarkers in motor neuron disease - a longitudinal translational neuroimaging and CSF study

Lead Research Organisation: University of Oxford
Department Name: Clinical Neurosciences

Abstract

Motor Neuron Disease (MND) is a devastating neurodegenerative condition affecting around 5000 people in the UK. Loss of motor neurons produces muscle wasting variably affecting the limbs, swallowing, and ultimately breathing. The average survival from symptom onset is 3-4 years. There is no specific test for MND and diagnosis relies mainly on clinical examination. Many patients wait more than a year from symptom onset to receive a firm diagnosis. Over 75 drugs have failed in clinical trials but it can take many months to establish lack of efficacy with certainty.
This research will study a group of MND patients every six months using magnetic resonance imaging (MRI) of the brain in combination with molecular analysis of the surrounding cerebrospinal fluid (CSF). The Oxford Centre for Functional MRI Brain (FMRIB) has developed techniques highly sensitive to damage within nerve pathways in the brain, and there is local expertise to study the CSF for molecules associated with these changes. In combination it is expected this will provide markers of disease activity to improve the diagnostic process and the way clinical drug trials are monitored, so ineffective drugs can be more quickly discounted. New insights into disease mechanisms may provide novel drug targets.

Technical Summary

Aims:
To improve the diagnostic algorithm in Motor Neuron Disease (MND), further understanding of pathogenesis (particularly neuro-inflammation), illuminate phenotype heterogeneity, and optimise patient selection and monitoring in therapeutic trials.

Objectives:
The identification of biomarkers through the longitudinal integration of cerebral magnetic resonance structural and functional imaging (MRI), proteomic and cytokine analysis of cerebrospinal fluid (CSF), with clinical study of patients in a multi-disciplinary MND Care Centre.

Design:
Longitudinal and cross-sectional in vivo pathological study.

Methodology:
Seventy-two MND patients, spanning a full range of phenotypes and progression rates, will undergo serial MRI of the brain and CSF analysis. Studies will be performed at baseline and every six months via The Oxford MND Centre where disease progress can be monitored and patient care optimised. Ten asymptomatic subjects, at risk of MND by virtue of homozygous ‘D90A‘ mutations of the superoxide dismutase-1 gene, 10 symptomatic D90A patients and 25 healthy controls will undergo a single MRI and CSF study. MRI studies will be carried out at the Oxford Centre for Functional Magnetic Resonance Imaging of the Brain (FMRIB), involving diffusion tensor, structural and resting state functional MRI (fMRI) sequences at 3 Tesla. Fractional anisotropy (FA) will provide a marker of neuronal integrity in motor and extra-motor regions. Whole-brain unbiased FA analysis will employ FMRIB‘s Tract-based Spatial Statistics (TBSS). Locally-developed Probabalistic Tractography (PT) will visualise neuronal pathways and explore connectivity of motor and extra-motor regions. Voxel-based morphometric analysis of structural MRI will detect changes in grey and white matter volume. Resting state fMRI will be studied speculatively as a marker of extra-motor pathology. CSF samples will undergo proteomic analysis using 2D gel electrophoresis and mass spectrometry to identiteins associated with disease progression and phenotype. CSF cytokine analysis will specifically explore neuro-inflammatory processes.

Scientific & Medical Opportunities:
The identification of biomarkers in MND will improve the diagnostic pathway and inform prognosis, permitting ineffective drugs to be more quickly discounted in clinical trials. The study of pre-symptomatic patients has the potential to detect the earliest changes in pathogenesis. The exploration of neuro-inflammatory mechanisms may identify novel targets for drug development. Scientific developments anticipated during the study period include pilot studies in MND patients of ultra-small paramagnetic particles of iron oxide administered intravenously, taken up by macrophages and visualised using MRI to further probe cerebral neuro-inflammatory activity. Developments in spinal cord fMRI at FMRIB will permit changes across the entire central nervous system to be integrated.

Publications

10 25 50
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Chen Z (2010) The internet for self-diagnosis and prognostication in ALS. in Amyotrophic lateral sclerosis : official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases

 
Title Patrick The Optimist 
Description Collaboration with artist and MND patient Patrick Joyce and Oxford Museum of Natural History to present exhibit on MND for general public. Included large head with very long (scaled) motor neuron running around the museum, and pots with human brains to look at. 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2011 
Impact Visitor book revealed huge interest from public, including many children 
 
Description ENMC Workshop on EU Consensus in Amyotrophic lateral sclerosis (ALS)
Geographic Reach Asia 
Policy Influence Type Participation in advisory committee
Impact Led to formation of ENCALS - The European Network for the Cure of ALS which has led on to numerous research grants, meetings, and clinical trials.
URL http://www.encals.eu
 
Description MND Association UK National Strategy Manifesto
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Roadmap for wet biomarker development in amyotrophic lateral sclerosis (ALS)
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in other policy documents
Impact Produced international consensus statement (with me as co-first author) on future development and validation of 'wet' biomarkers in ALS, Published in ALS journal.
 
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 Wellcome Trust/MRC panel on incidental findings in research
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact Development of consensus guidelines on management of incidental findings during the course of research participation.
 
Description Departmental MRC PhD Studentship Matt Evans
Amount £50,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 10/2009 
End 06/2012
 
Description MNDA small grants
Amount £1,500 (GBP)
Funding ID 1st NiSALS meeting 
Organisation Motor Neurone Disease Association (MND) 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2010 
End 10/2010
 
Description Oxford Health Services Research Committee Project Grant
Amount £7,000 (GBP)
Organisation University of Oxford 
Sector Academic/University
Country United Kingdom
Start 02/2010 
End 02/2012
 
Description Rhodes Foundation DPhil Scholarship Rakesh Sharma
Amount £100,000 (GBP)
Organisation Rhodes Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2009 
End 06/2012
 
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 Oxford Biomarker Bank 
Description Ethical approval to seek consent 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 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 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 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 MS Metabolomics 
Organisation University of Manchester
Country United Kingdom 
Sector Academic/University 
PI Contribution Provision of longitudinal CSF samples from ALS patients
Collaborator Contribution Mass spectrometry metabolomic analysis
Impact Paper on SPMS metabolomics 2014.
Start Year 2012
 
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 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 Neuroinflammation in models of ALS 
Organisation University of Oxford
Department CRUK/MRC Oxford Institute for Radiation Oncology
Country United Kingdom 
Sector Academic/University 
PI Contribution DPhil student supervision and expertise in ALS.
Collaborator Contribution Application of high-field MRI and immune histochemistry of mouse models of ALS providing new insights into role of inflammation in pathogenesis.
Impact Presentation of data at international meetings. One major review and 3 original research papers published.
Start Year 2009
 
Description Neuroinflammation in models of ALS 
Organisation University of Oxford
Department Department of Pharmacology
Country United Kingdom 
Sector Academic/University 
PI Contribution DPhil student supervision and expertise in ALS.
Collaborator Contribution Application of high-field MRI and immune histochemistry of mouse models of ALS providing new insights into role of inflammation in pathogenesis.
Impact Presentation of data at international meetings. One major review and 3 original research papers published.
Start Year 2009
 
Description Progranulin 
Organisation University of Leuven
Country Belgium 
Sector Academic/University 
PI Contribution Provision of CSF from ALS patients and healthy controls
Collaborator Contribution Assay for progranulin and cystatin C
Impact Not detected in samples
Start Year 2012
 
Description Proton spectroscopy metabolomics 
Organisation University of Oxford
Department CRUK/MRC Oxford Institute for Radiation Oncology
Country United Kingdom 
Sector Academic/University 
PI Contribution Provision of serial serum and CSF samples from ALS patients.
Collaborator Contribution Nuclear magnetic resonance spectroscopy metabolomics expertise.
Impact Successful grant application to Thierry Latran Foundation 2-year post-doctoral position. Paper in Neurology based on MS compared to ALS as disease control. Paper submitted to ALS-FTD on ALS data.
Start Year 2012
 
Description Stony Brook University 
Organisation Stony Brook University
Country United States 
Sector Academic/University 
PI Contribution Provision of R-fMRI data in ALS.
Collaborator Contribution Machine-learning analysis as potential biomarker.
Impact Paper in PLoS ONE on biomarker potential
Start Year 2011
 
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
 
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 ALSA Biomarker Initiative Boston 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact ~20 ALS bioamrker experts. Invited presentation on neuroimaging.

New collaboration potential.
Year(s) Of Engagement Activity 2011
 
Description ALSA Drug Discovery in ALS, Washington 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact ~100 scientists, clinicians, Pharma representatives reviewing prospects for new drugs in ALS. Invited speaker on neuroimaging biomarkers.

Future collaboration potential and increased international reputation in the field.
Year(s) Of Engagement Activity 2012
 
Description ALSA Patient Group meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited talk on ALS biomarker research.

Facilitated fund-raising for ALSA and raised personal profile as international research and opinion leader.
Year(s) Of Engagement Activity 2013
 
Description Association of Sri Lankan Neurologists' Scientific Sessions 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact ~100 neurologists and medical trainees. Invited presentation on 'Advances in Diagnosis and Management in MND'.

Foster specialist trainee links with UK.
Year(s) Of Engagement Activity 2012
 
Description BANN meeting Oxford 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Health professionals
Results and Impact British Association of Neurological Nurses Annual Conference invited speaker on 'The Challenges of MND Research'.

Improved awareness and care of MND patients.
Year(s) Of Engagement Activity 2010
 
Description BBC Radio Oxford MND Awareness Week 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Discussion of MND Care and Research on BBC Radio Oxford morning show as part of MND Awareness Week

Several supportive callers to studio after interview.
Year(s) Of Engagement Activity 2010
 
Description Cambridge Neuroscience meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Invited presentation on 'New frontiers in ALS'.

Education of other neuroscience centres and raised profile as ALS research leader.
Year(s) Of Engagement Activity 2013,2015
 
Description Cherwell School Science Enrichment Programme 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Schools
Results and Impact Annual presentation to 50-100 local sixth formers on my research and medical careers in general.

Several students keen to find out more. Asked by school to repeat on an annual basis.
Year(s) Of Engagement Activity 2010,2011,2012
 
Description Cold Spring Harbor Banbury Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact I convened a meeting of internationally-leading neurobiologists, and ALS clinicians to discuss 'Evolutionary & Developmental considerations in the pathogenesis of ALS/FTD'.
Hosted by the Banbury Workshop group at Cold Spring Harbor in conjunction with the ALS Association USA.

Unique meeting, with highly stimulating two days' discussion and opportunity for new collaborations.
Raised personal profile as leader in ALS research strategy.
Year(s) Of Engagement Activity 2013
 
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 Fort Denison Summit, Sydney 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact 20 key opinion leaders in ALS whom I convened for a workshop 'Challenging Dogma' to debate current ideas about pathogenesis.

Review article. Increased international reputation as ALS expert.
Year(s) Of Engagement Activity 2011
 
Description HRH The Princess Royal at The Royal Society 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Discussion with HRH and donors on the challenges of ALS care and research

Raising awareness of ALS and MNDA funding to support research
Year(s) Of Engagement Activity 2013
 
Description Hannover Neurosciences meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Invited talk on ALS biomarker research.

Raised international profile as research leader in field.
Year(s) Of Engagement Activity 2013
 
Description International ALS Conference Tarrytown 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact ~100 international ALS experts reviewing current theories of pathogenesis.

Edited review for Annals of Neurology. Increased international impact.
Year(s) Of Engagement Activity 2011
 
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 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 MNDA Awareness Campaign 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Informal briefing of parliamentarians on MND issues.

Raised awareness of MND needs, and my role as opinion leader.
Year(s) Of Engagement Activity 2012
 
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 Board of Trustees 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Overview of MND and the BioMOx project.

Raised awareness among Trustees and Donors of the challenge and insecurity of the Clinical Academic career pathway.
Year(s) Of Engagement Activity 2009
 
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
 
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 Thumbprint 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Articles highlighting my BioMOx biomarker study in national magazine for MND patients.
Autumn 2012 - letter in reply to PLS patient asking about research issues.

Significant boost to recruitment of participants.
Raising awareness of the value of clinical research.
Year(s) Of Engagement Activity 2009,2010,2011,2012
 
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 NEALS annual meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact North-east ALS Consortium, USA annual meeting for ~150 PIs and team members. Invited presentation on neuroimaging.

New collaborations and increased international reputation.
Year(s) Of Engagement Activity 2012
 
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
URL http://www.ondri.ca
 
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 RSCI inuagural neuroscience symposium 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact ~100 scientists. Invited keynote talk on 'Biomarkers in ALS'

Increased international awareness and reputation in the field.
Year(s) Of Engagement Activity 2011
 
Description Therapists MND Workshop 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Annual workshop to ~50 healthcare therapists and 25 Palliative Care Physicians involved in the care of MND patients around the UK. Topics:

Diagnosis and management in ALS
Biomarker research in ALS
Respiratory and secretion management in ALS
Palliative care in ALS

Greater awareness and improved management.
Year(s) Of Engagement Activity 2010,2011,2012,2013,2015
 
Description Wellcome Trust/MRC panel on incidental findings in research 
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 Review of guidelines for IFs.

Contributed to shaping emerging national consensus in area of research IFs.
Year(s) Of Engagement Activity 2012,2014
 
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
URL http://www.oxfordmnd.net
 
Description www.patricktheoptimist.org 
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 No. 2 of MND patient's national campaign to paint 100 'Incurable Optimists' before he dies of MND. My image, among others, featured all over the London Underground for one month.

Large number of website hits.
Year(s) Of Engagement Activity 2010,2011