STRENGTH
Lead Research Organisation:
King's College London
Department Name: Clinical Neuroscience
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
- King's College London (Lead Research Organisation)
- University of Milan (Collaboration)
- University College London (Collaboration)
- University of Ulm (Collaboration)
- National Institute of Health and Medical Research (INSERM) (Collaboration)
- University College Dublin (Collaboration)
- Karolinska Institute (Collaboration)
- ENCALS (Collaboration)
- Motor Neurone Disease Association (MND) (Collaboration)
- Université Catholique de Louvain (Collaboration)
- Trinity College Dublin (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- UNIVERSITY OF EDINBURGH (Collaboration)
- University of Turin (Collaboration)
- University of Sheffield (Collaboration)
- MND Scotland (Collaboration)
- University Medical Center Utrecht (UMC) (Collaboration)
- My Name'5 Doddie Foundation (Collaboration)
- THE WALTON CENTRE (Collaboration)
- University of Massachusetts (Collaboration)
- University of Leuven (Collaboration)
- Cantonal Hospital St. Gallen (Collaboration)
- EU Joint Programme - Neurodegenerative Disease Research (JPND) (Collaboration)
Publications
Adey BN
(2023)
Large-scale analyses of CAV1 and CAV2 suggest their expression is higher in post-mortem ALS brain tissue and affects survival.
in Frontiers in cellular neuroscience
Agosta F
(2015)
The El Escorial criteria: strengths and weaknesses.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Akimoto C
(2014)
A blinded international study on the reliability of genetic testing for GGGGCC-repeat expansions in C9orf72 reveals marked differences in results among 14 laboratories.
in Journal of medical genetics
Al Khleifat A
(2019)
Telomere length is greater in ALS than in controls: a whole genome sequencing study.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Al Khleifat A
(2021)
Intuitive Staging Correlates With King's Clinical Stage.
in Amyotrophic lateral sclerosis & frontotemporal degeneration
Al Khleifat A
(2022)
Telomere length analysis in amyotrophic lateral sclerosis using large-scale whole genome sequence data.
in Frontiers in cellular neuroscience
Al-Chalabi A
(2019)
Oral levosimendan in amyotrophic lateral sclerosis: a phase II multicentre, randomised, double-blind, placebo-controlled trial.
in Journal of neurology, neurosurgery, and psychiatry
Al-Chalabi A
(2015)
Commentary: Mapping the Human Exposome: Without It, How Can We Find Environmental Risk Factors for ALS?
in Epidemiology (Cambridge, Mass.)
Al-Chalabi A
(2019)
Potential of the Cardiovascular Drug Levosimendan in the Management of Amyotrophic Lateral Sclerosis: An Overview of a Working Hypothesis.
in Journal of cardiovascular pharmacology
Al-Chalabi A
(2021)
Clinical staging in amyotrophic lateral sclerosis: analysis of Edaravone Study 19.
in Journal of neurology, neurosurgery, and psychiatry
| Title | Facebook interview about Project MinE |
| Description | Interview on the number of samples needed for Project MinE whole genome sequencing |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2018 |
| Impact | Many views and increased participation in Project MinE by the public |
| URL | https://www.facebook.com/watch/?v=1033239280173042 |
| Title | Livestream of talk |
| Description | Livestream video of a talk |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2019 |
| Impact | The video has been widely viewed and remains available for patients and the public. |
| URL | https://www.youtube.com/watch?v=KRb1HWv08gQ |
| Title | PPI video for MND Association |
| Description | Video interview by MND Association for Twitter |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2019 |
| Impact | Viewed many times by symposium attendees and the public |
| URL | https://twitter.com/mndassoc/status/1201961917117583362 |
| Title | STRENGTH Logo design |
| Description | A major achievement of the communication plan of project STRENGTH was the launch of the project logo. |
| Type Of Art | Artwork |
| Year Produced | 2014 |
| Impact | Project dissemination activity, project awareness |
| URL | http://www.encals.eu/page/european-collaborative-projects/ |
| Title | YouTube educational video on ALS |
| Description | Educational video on ALS research available on YouTube |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2018 |
| Impact | Patient information and understanding about ALS and research |
| URL | https://www.youtube.com/watch?v=7KVSbwe7bHo |
| Description | Advisory Committee for large pharmaceutical company |
| Geographic Reach | North America |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | A new drug for ALS is now available, an outcome influenced by this advisory panel. The drug influences quality of life. |
| Description | Advisory committee for a small pharmaceutical company |
| Geographic Reach | Europe |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Affected MND genetic testing protocols nationally |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or improved professional practice |
| Impact | Genetic testing in MND is no longer restricted to those under 40 or those with a positive family history. The evidence supporting the change was published here: https://pubmed.ncbi.nlm.nih.gov/36162820/ |
| Description | Airlie House ALS Clinical Trials Guidelines |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Impact | This was an international consultation on best practice for clinical trials in ALS, facilitated through a Delphi process. The best practice guidelines are still in review but almost finalized. |
| Description | Association of British Neurologists Genetics Advisory Committee |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Description | COVID guidance for patients |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| Impact | Worked with the Motor Neurone Disease Association to provide national advice to patients with MND during the COVID pandemic, improving quality of life and reducing risk of infectiob, hospitalization and death. |
| URL | https://www.mndassociation.org/about-mnd/coronavirus-and-mnd/ |
| Guideline Title | Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry |
| Description | Citation of ALS clinical staging in FDA guidelines for clinical trials |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | Recommendation for commercial and academic-led trials in ALS to consider disease stage for inclusion and outcome |
| URL | https://www.regulations.gov/document?D=FDA-2013-N-0035-0973 |
| Guideline Title | Clingen Gene Curation Expert Panel for ALS |
| Description | Expert member of Clingen Gene Curation Expert Panel for ALS |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | A curated list of each gene reported as implicated in ALS, with the evidence supporting such a claim systematically reviewed |
| URL | https://clinicalgenome.org/affiliation/40096/ |
| Guideline Title | Clingen Variant Curation Expert Panel for ALS |
| Description | Expert member of Clingen Variant Curation Expert Panel on SOD1 |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| URL | https://clinicalgenome.org/affiliation/50096/ |
| Guideline Title | A proposal for new diagnostic criteria for ALS |
| Description | Gold Coast Criteria for the Diagnosis of ALS |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | These are new diagnostic criteria for ALS and improve the way in which the diagnosis is given, simplify the route to making a diagnosis (therefore speeding it), improve access to clinical trials and clarify the diagnosis for patients, improving understanding. |
| URL | https://www.sciencedirect.com/science/article/pii/S1388245720301383?via%3Dihub |
| Description | Guidance on prevention strategies for ALS |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Membership of a guideline committee |
| Description | Guidelines for pain management in MND/ALS |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | As a result of a study of pain in MND/ALS, we have published advice for patients and for health care professionals for the management of pain, and this has been adopted by the patient organisation, the Motor Neurone Disease Association |
| URL | https://www.mndassociation.org/forprofessionals/mndmanagement/pain/ |
| Guideline Title | Revised Airlie House consensus guidelines for design and implementation of ALS clinical trials |
| Description | King's Clinical ALS Staging |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| Impact | The clinical staging system is now recommended for ALS clinical trials, and is required by the FDA for future trials. |
| Guideline Title | Revised Airlie House consensus guidelines for design and implementation of ALS clinical trials |
| Description | King's clinical staging - in consensus guidelines for clinical trials in ALS |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in clinical guidelines |
| URL | https://n.neurology.org/content/neurology/early/2019/03/08/WNL.0000000000007242.full.pdf |
| Description | Staging for clinical practice and clinical trials |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The influence is a clinical staging system for ALS. This has been used by 12 European countries, all trained in assessment and certified. It has also been used for research and clinical practice in at least one US ALS clinic. |
| Description | Standard operating procedure for King's ALS clinical staging |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | King's ALS clinical staging is now widely used in clinical practice and in clinical trials and other clinical research. This standard operating procedure ensures practice is uniform worldwide. |
| URL | https://www.ncbi.nlm.nih.gov/pubmed/30773950 |
| Description | Standardised method for application of ALSFRS-R |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The ALSFRS-R is a rating scale for assessing function in ALS. The influence is a standardised method for application of the ALSFRS-R, trained and certified across 12 European countries, ensuring standardised assessment and harmonised outcomes. |
| Description | Timing of Riluzole use by clinical stage of ALS |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | We showed that Riluzole extends the last stages of life with ALS. It has since also been shown that it extends the very early stages too by replicating our methods applied to a different dataset. These findings have impact on the advice given to patients, and mean that RIluzole should be started early, but also its use in late stage needs discussion with the patient, since it will simply extend life at a stage where health related quality of life is poor. |
| URL | https://www.ncbi.nlm.nih.gov/pubmed/29525492 |
| Description | A new strategy for clinical trials and personalised therapy in MND |
| Amount | £119,768 (GBP) |
| Funding ID | Al-Chalabi/Apr19/870-791 |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2019 |
| End | 07/2021 |
| Description | ALSA Project Grant |
| Amount | £5,145 (GBP) |
| Funding ID | 14-LGCA-179 ERI27608 |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 02/2014 |
| End | 01/2017 |
| Description | ALSA Project Grant |
| Amount | £67,170 (GBP) |
| Funding ID | 14-LGCA-182 |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 08/2014 |
| End | 07/2015 |
| Description | An Integrated Genome-Based Approach to Individualised Treatment in ALS and FTD |
| Amount | $150,000 (USD) |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 01/2022 |
| End | 09/2023 |
| Description | Cognitive and behavioural impairment in Amyotrophic Lateral Sclerosis: Comparing measures and validating revised consensus diagnostic criteria for Amyotrophic Lateral Sclerosis - Frontotemporal Spectrum Disorder |
| Amount | £95,574 (GBP) |
| Funding ID | Goldstein/Oct17/892-792 |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2018 |
| End | 09/2021 |
| Description | Deep Dementia Phenotyping and Diverse Precision Medicine |
| Amount | £312,617 (GBP) |
| Organisation | Alan Turing Institute |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 06/2022 |
| Description | JPND STRENGTH |
| Amount | £530,723 (GBP) |
| Funding ID | MR/L501529/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2014 |
| End | 01/2017 |
| Description | MNDA Care Centre Grant |
| Amount | £267,782 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 09/2018 |
| Description | MNDA Project Grant (Bioinformatics support for Project MinE) |
| Amount | £171,479 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 09/2017 |
| Description | MNDA Project Grant (Project MinE - GWAS) |
| Amount | £610,000 (GBP) |
| Funding ID | JdV/LvdB/mm/2013.012 MinE |
| Organisation | ALS Netherlands |
| Sector | Hospitals |
| Country | Netherlands |
| Start | 04/2013 |
| End | 04/2015 |
| Description | MNDA Project Grant (The UK National MND Registry) |
| Amount | £277,101 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 09/2019 |
| Description | MNDA Topup grant |
| Amount | £22,000 (GBP) |
| Funding ID | AlChalabi/Feb14/908-793 |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2014 |
| End | 07/2015 |
| Description | Programme Grant (MIROCALS) |
| Amount | £387,723 (GBP) |
| Funding ID | 633413 |
| Organisation | European Commission |
| Department | Horizon 2020 |
| Sector | Public |
| Country | European Union (EU) |
| Start | 09/2015 |
| End | 08/2019 |
| Description | Research Grant (ALSoD) |
| Amount | £40,000 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 02/2017 |
| End | 01/2020 |
| Description | Research Grant (ALSoD) |
| Amount | £102,469 (GBP) |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 02/2017 |
| End | 01/2020 |
| Description | Research Grant (ATXN2 penetrance) |
| Amount | £134,207 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2015 |
| End | 08/2019 |
| Description | Research Grant (Bioinformatics) |
| Amount | £171,749 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2014 |
| End | 09/2017 |
| Description | Research Grant (HERV-K) |
| Amount | £241,949 (GBP) |
| Organisation | The ALS Association |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 11/2017 |
| End | 10/2019 |
| Description | Research Grant (JPND BRAIN-MEND) |
| Amount | £2,044,052 (GBP) |
| Funding ID | MR/R024804/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2018 |
| End | 01/2021 |
| Description | Research Grant Fellowship |
| Amount | £265,000 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2016 |
| End | 02/2019 |
| Description | Research Grant Studentship |
| Amount | £95,574 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 07/2018 |
| End | 06/2021 |
| Description | Toward multiomics-based next-generation diagnostics for precision medicine in ALS and FTD |
| Amount | £131,999 (GBP) |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 07/2024 |
| Description | Using statistical models and machine learning to find subgroups of patients with homogeneous disease causes in Amyotrophic Lateral Sclerosis |
| Amount | £166,384 (GBP) |
| Funding ID | Iacoangeli/Apr19/869-791 |
| Organisation | Motor Neurone Disease Association (MND) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 10/2019 |
| End | 09/2025 |
| Title | DNA Scan v2 |
| Description | DNA Scan v2 is a tool that allows automated annotation of human genome data quickly and efficiently, identifying SNVs, structural variants, indels, expansions and retroviruses automatically. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The tool is being used to analyse genomics data from the MIROCALS phase 3 clinical trial |
| URL | https://github.com/hevmarriott/DNAscanv2 |
| Title | DNAscan: a fast, computationally and memory efficient bioinformatics pipeline for the analysis of DNA next-generation-sequencing data |
| Description | The generation of DNA Next Generation Sequencing (NGS) data is a commonly applied approach for studying the genetic basis of biological processes, including diseases, and underpins the aspirations of precision medicine. However, there are significant challenges when dealing with NGS data. A huge number of bioinformatics tools exist and it is therefore challenging to design an analysis pipeline; NGS analysis is computationally intensive, requiring expensive infrastructure which can be problematic given that many medical and research centres do not have adequate high performance computing facilities and the use of cloud computing facilities is not always possible due to privacy and ownership issues. We have therefore developed a fast and efficient bioinformatics pipeline that allows for the analysis of DNA sequencing data, while requiring little computational effort and memory usage. We achieved this by exploiting state-of-the-art bioinformatics tools. DNAscan can analyse raw, 40x whole genome NGS data in 8 hours, using as little as 8 threads and 16 Gbs of RAM, while guaranteeing a high performance. DNAscan can look for SNVs, small indels, SVs, repeat expansions and viral genetic material (or any other organism). Its results are annotated using a customisable variety of databases including ClinVar, Exac and dbSNP, and a local deployment of the gene.iobio platform is available for an on-the-fly result visualisation. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | The method speeded up our genetic research, overcoming computational and technical problems |
| Title | ENCALS Survival Model for ALS |
| Description | This mathematical tool allows a personalized survival prediction for patients. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | The tool allows a personalized survival prediction for any individual patient. This is used in clinic by neurologists to counsel patients, but is particularly useful for the design of clinical trials, and is now being used as an inclusion criterion in trials. |
| URL | http://encalssurvivalmodel.org/ |
| Title | King's ALS Staging |
| Description | A clinical staging system for ALS. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2012 |
| Provided To Others? | Yes |
| Impact | The method is now used for analysis in clinical trials and other clinical research, and for investigating the timing of cognitive change in ALS. |
| Title | King's Clinical Staging for ALS |
| Description | King's Clinical Staging is a system for describing ALS disease stage using simple clinical parameters. It was first published in 2012, but as a result of the award ALS-CarE, has been developed further, validated, used by multiple other research groups, and implemented into clinical practice internationally. It has also been used and developed for analysis of genetic outcomes in the award STRENGTH. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | 1. Multiple other research groups have used this method for analysis (eg Association between estimated total daily energy expenditure and stage of amyotrophic lateral sclerosis. Lee J et al. Nutrition. 2017 Jan;33:181-186. PMID: 27544003; Amyotrophic lateral sclerosis: a comparison of two staging systems in a population-based study. Ferraro D et al. Eur J Neurol. 2016 Sep;23(9):1426-32. PMID: 27238551; Neuropsychological assessment in different King's clinical stages of amyotrophic lateral sclerosis. Trojsi F et al. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17(3-4):228-35. PMID: 26905940 and others). 2. Several pharmaceutical companies have started to use the method as an outcome measure in clinical trials for ALS 3. An academic led clinical trial is using ALS staging as an outcome measure 4. ALS Staging is now included as a formal outcome measure in international consensus guidelines from the World Federation of Neurology (see section 3 in URL below) |
| URL | https://www.rarediseasesnetwork.org/cms/Portals/5/Final%20Draft%20of%20ALS%20CT%20Guidelines%20for%2... |
| Title | Latent class cluster analysis |
| Description | Patients are stratified into clinical subgroups based on latent class cluster analysis of variables ascertained at first clinic visit. This strongly predicts survival, may predict genetic subgroups and can be replicated in multiple populations |
| Type Of Material | Model of mechanisms or symptoms - human |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | This method is now used across European ALS research groups to stratify patients for research, and is being studied in two different programme grants as a stratification method. |
| Title | Multistage model of ALS |
| Description | We have applied a model derived from the cancer field to neurodegeneration. We have shown that ALS is a 6-step process rather than a dose-dependent process. |
| Type Of Material | Model of mechanisms or symptoms - human |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | This represents a large change in the prevailing disease model and will allow new approaches for identification of risk factors and prevention strategies. |
| URL | http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(14)70219-4/fulltext |
| Title | Penetrance Calculator Tool |
| Description | This is a tool to estimate gene penetrance (the probability of phenotype given genotype) from a number of potential parameters that might be available when family data is missing. For example, the rate of sporadic disease and familial disease can be used to estimate penetrance. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The tool has been used to estimate penetrance of a number of ALS genes which is of importance for genetic counselling. We are developing the tool further to allow age-dependent analyses. |
| URL | https://adpenetrance.rosalind.kcl.ac.uk/ |
| Title | Retrosnake |
| Description | This is a research tool to identify retrovirus or transposable element sequences in human genomic data. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2021 |
| Provided To Others? | No |
| Impact | The tool has been used to inform the NIHR-funded phase 3 clinical trial Lighthouse 2. The link is set to private pending approval to make public from a collaborating partner. |
| URL | https://github.com/KHP-Informatics/RetroSnake |
| Title | Standard Operating Procedure for King's ALS Clinical Staging |
| Description | Clinical staging method for people with ALS. The King's system is now widely used internationally in clinic, research and clinical trials. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2019 |
| Provided To Others? | Yes |
| Impact | Clinical trial design now incorporates King's staging to understand the timing of treatment benefit, for analysis as an outcome measure, and for health economics analysis. |
| URL | https://www.ncbi.nlm.nih.gov/pubmed/30773950 |
| Title | ALSoD |
| Description | The ALS Online Database is a genetic database showing all ALS related genetic variations with their evidence and various tools for understanding phenotype, penetrance, publications and credibility. |
| Type Of Material | Database/Collection of data |
| Provided To Others? | Yes |
| Impact | Currently, data from this database is being used to inform commercial gene therapy studies in ALS. It is also widely accessed internationally and therefore used in multiple research projects. |
| URL | http://www.alsod.ac.uk |
| Title | Biomart Database |
| Description | The aim of WP5 (Interaction analysis) is to identify risk and modifying factors acting in concert to influence ALS. To achieve this, the huge datasets generated by the other WPs and existing initiatives will be combined in a single collaborative database using the BioMart platform (www.biomart.org), an open source system designed specifically for large biological datasets including next generation sequencing data, held at multiple locations. Data will be handled for bioinformatics analysis using PEGASUS workflow software (http://pegasus.isi.edu/), an open source script-based system designed for managing scientific tasks, and ideally suited to bioinformatics. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | The BioMart database is being currently set up, so that the huge datasets generated by WP1-4 can be combined in a single collaborative database. |
| Title | European ALS Biobank (EAB) |
| Description | Establishment of the "European ALS Biobank (EAB)" The European ALS Biobank is set up as a virtual biobank, meaning that a web-based interface to a database for all partners to collect and access data and sample locations has been developed. The data repository is set up in Progeny Software and well suited for these purposes. The biobank includes 13124 ALS case and 17465 ALS control DNA samples and 70 ALS case and 50 ALS control epigenetic samples. To make this scientifically significant detailed clinical information is required. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2014 |
| Provided To Others? | Yes |
| Impact | Relevant clinical variables have been defined and chronological-progression markers based on validated functional scores have been included in a database template for collection of core clinical data, which has been reviewed by all relevant consortium members. Core clinical data is defined as the minimal data to be collected on ALS patients for various studies. The core clinical dataset contains general personalia (DOB, gender), diagnosis (revised El Escorial scoring), co-morbidity and disease onset & symptoms, respiratory function tests, endpoint data, cognitive status (ECAS), short familial history, genetic screening and ALS-FRS-R. The core clinical dataset is clearly defined, to enhance compliance in data entry. A standard operating procedure (SOP) has been created to make sure all researchers collect the data in the same way. Guidelines for general use of Progeny have been developed as well. |
| Title | Latent Class Cluster Analyses (LCCA) |
| Description | A latent class cluster analyses is a latent variable model where the latent variable is a categorical variable with k possible latent classes and the observed items are either categorical or continuous. It is used to classify ALS patients on the basis of the described variables into symptom clusters. In our study the cluster solution needs to be controlled for country. This is done by multi-group latent cluster modelling, which compares the structure of measurement models across groups (in this case: countries) and allows to control for differences between countries. It is similar to factorial invariance assessment in factor analyses. Multi-group latent class cluster analyses were performed by including "country" as a categorical predictor variable of the latent class in the model (Kuha 2013). |
| Type Of Material | Computer model/algorithm |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | For each cluster solution the measurement model equivalence with latent cluster probabilities varying between countries (proportion of clusters can differ between countries) but the same measurement model between countries (the relationship between items and latent variables is the same between countries) fits data best. After selecting the specification of the multi-group latent variable model the number of classes was determined by comparing goodness of fit measures. Figure 2 shows the information criteria (smaller is better model) for the different number of clusters. It can be seen that information criteria decrease with increasing number of clusters but decrease slows down after 4 to 5 clusters. After 5 clusters, clusters split in smaller ones or new clusters become extremely small. We therefore decided to select the 5 cluster solution which is similar to the previous studies. The entropy of the selected model was very good (0.95). |
| Title | National MND Register |
| Description | A national population register capturing every case of ALS in the UK with clinical information |
| Type Of Material | Database/Collection of data |
| Year Produced | 2015 |
| Provided To Others? | Yes |
| Impact | The database will be used as the basis of a funded research programme, AMBROSIA, designed to identify biomarkers for ALS |
| Title | Project MinE databrowser |
| Description | Summary statistics and output from the Project MinE whole genome sequencing consortium |
| Type Of Material | Database/Collection of data |
| Year Produced | 2017 |
| Provided To Others? | Yes |
| Impact | Increased ability for researchers to identify ALS genes or interpret their own findings. Increased collaboration. |
| URL | http://databrowser.projectmine.com/ |
| Title | Survival prediction model for ALS |
| Description | A comprehensive survival prediction tool for ALS |
| Type Of Material | Computer model/algorithm |
| Year Produced | 2018 |
| Provided To Others? | Yes |
| Impact | Use of the model by pharmaceutical company analyzing clinical trial data |
| URL | http://encalssurvivalmodel.org/ |
| Description | BRAIN-MEND |
| Organisation | EU Joint Programme - Neurodegenerative Disease Research (JPND) |
| Country | European Union (EU) |
| Sector | Public |
| PI Contribution | Coordinator. Samples, expertise, data, infrastructure |
| Collaborator Contribution | Samples, expertise, data, infrastructure |
| Impact | None yet |
| Start Year | 2018 |
| Description | Precision ALS |
| Organisation | University College Dublin |
| Country | Ireland |
| Sector | Academic/University |
| PI Contribution | We are contributing clinical data from a population register of ALS |
| Collaborator Contribution | A large data handling and storage infrastructure, able to link multiple forms of data internationally |
| Impact | None yet |
| Start Year | 2022 |
| Description | Project MinE |
| Organisation | Trinity College Dublin |
| Department | Neurology |
| Country | Ireland |
| Sector | Academic/University |
| PI Contribution | This is an international whole genome sequencing consortium possible because of the infrastructure derived from the MRC/JPND programme STRENGTH - we have contributed 2000 ALS and control samples as well as funding and a template for other teams to obtain funding |
| Collaborator Contribution | The partners have contributed whole genome sequences and negotiated with us for infrastructure. See http://www.projectmine.com |
| Impact | Various genetics papers listed under STRENGTH programme |
| Start Year | 2014 |
| Description | Project MinE |
| Organisation | University Medical Center Utrecht (UMC) |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | This is an international whole genome sequencing consortium possible because of the infrastructure derived from the MRC/JPND programme STRENGTH - we have contributed 2000 ALS and control samples as well as funding and a template for other teams to obtain funding |
| Collaborator Contribution | The partners have contributed whole genome sequences and negotiated with us for infrastructure. See http://www.projectmine.com |
| Impact | Various genetics papers listed under STRENGTH programme |
| Start Year | 2014 |
| Description | Project MinE |
| Organisation | University of Massachusetts |
| Department | University of Massachusetts Medical School |
| Country | United States |
| Sector | Academic/University |
| PI Contribution | This is an international whole genome sequencing consortium possible because of the infrastructure derived from the MRC/JPND programme STRENGTH - we have contributed 2000 ALS and control samples as well as funding and a template for other teams to obtain funding |
| Collaborator Contribution | The partners have contributed whole genome sequences and negotiated with us for infrastructure. See http://www.projectmine.com |
| Impact | Various genetics papers listed under STRENGTH programme |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | Cantonal Hospital St. Gallen |
| Country | Switzerland |
| Sector | Hospitals |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | Catholic University of Louvain |
| Country | Belgium |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | Karolinska Institute |
| Country | Sweden |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | National Institute of Health and Medical Research (INSERM) |
| Department | Nimes (INSERM) |
| Country | France |
| Sector | Public |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | Trinity College Dublin |
| Country | Ireland |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University Medical Center Utrecht (UMC) |
| Country | Netherlands |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University of Leuven |
| Department | laboratory for cognitive neurology |
| Country | Belgium |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University of Milan |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University of Sheffield |
| Department | Sheffield Institute for Translational Neuroscience (SITraN) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University of Turin |
| Country | Italy |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | STRENGTH |
| Organisation | University of Ulm |
| Country | Germany |
| Sector | Academic/University |
| PI Contribution | This is a JPND Consortium for which I am coordinator |
| Collaborator Contribution | We provide genetics, statistical, bioinformatics, epigenetics, epidemiology and complex disease expertise. |
| Impact | Please see form publications. The collaboration is multidisciplinary including genetics, epidemiology, epigenetics, statistics and bioinformatics |
| Start Year | 2014 |
| Description | TONiC genetics study |
| Organisation | The Walton Centre |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | We are combining national register data with genetics and proteomics data and the TONiC study to add value to each study. |
| Collaborator Contribution | We are contributing the register infrastructure and genetics remote sampling know-how. |
| Impact | None yet |
| Start Year | 2021 |
| Description | TRICALS |
| Organisation | ENCALS |
| Country | Netherlands |
| Sector | Private |
| PI Contribution | Expertise in setting up a Europe wide clinical trials consortium. Training of staff in King's clinical ALS staging |
| Collaborator Contribution | Access to data from large pan-European population ALS registers. Expertise in setting up a clinical trials consortium |
| Impact | Training programme for TRICALS at https://www.encals.eu/meetings/tricals-workshop/ |
| Start Year | 2016 |
| Description | UK MND Research Institute |
| Organisation | MND Scotland |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | Motor Neurone Disease Association (MND) |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | My Name'5 Doddie Foundation |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | UK MND Research Institute |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national programme for MND research. The collaboration was to ask government for £50M for MND research over 5 years, with matched industry and charity funding. A government announcement was made confirming we were successful in September. |
| Collaborator Contribution | This has been a team effort, with fortnightly meetings for two years. |
| Impact | AS a result of this campaign, public knowledge of MND is far greater than before. We achieved a parliamentary debate, repeated national news coverage (which continues), policy change from government, policy change from the Welsh Senedd in progress, meetings with government ministers and advisers, and a pledge of funding from government. |
| Start Year | 2020 |
| Description | United2EndMND Research Group |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national campaign for funding MND Research over 5 years through a national programme of research. With colleagues, I have successfully lobbied for funding. We have developed a scientific vision for the programme. An initial pilot scheme using £4.25M is described here. |
| Collaborator Contribution | Colleagues have helped develop the vision and written the programme of work, leading various work packages. |
| Impact | None yet |
| Start Year | 2021 |
| Description | United2EndMND Research Group |
| Organisation | University of Edinburgh |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national campaign for funding MND Research over 5 years through a national programme of research. With colleagues, I have successfully lobbied for funding. We have developed a scientific vision for the programme. An initial pilot scheme using £4.25M is described here. |
| Collaborator Contribution | Colleagues have helped develop the vision and written the programme of work, leading various work packages. |
| Impact | None yet |
| Start Year | 2021 |
| Description | United2EndMND Research Group |
| Organisation | University of Oxford |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national campaign for funding MND Research over 5 years through a national programme of research. With colleagues, I have successfully lobbied for funding. We have developed a scientific vision for the programme. An initial pilot scheme using £4.25M is described here. |
| Collaborator Contribution | Colleagues have helped develop the vision and written the programme of work, leading various work packages. |
| Impact | None yet |
| Start Year | 2021 |
| Description | United2EndMND Research Group |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | I am the scientific lead for a national campaign for funding MND Research over 5 years through a national programme of research. With colleagues, I have successfully lobbied for funding. We have developed a scientific vision for the programme. An initial pilot scheme using £4.25M is described here. |
| Collaborator Contribution | Colleagues have helped develop the vision and written the programme of work, leading various work packages. |
| Impact | None yet |
| Start Year | 2021 |
| Title | Use of CSF-Neurofilament determinations and CSF-Neurofilament thresholds of prognostic and stratification value with regards to response to therapy in neuromuscular and neurodegenerative diseases. |
| Description | A method to stratify patients by predicted response to therapy |
| IP Reference | |
| Protection | Patent / Patent application |
| Year Protection Granted | |
| Licensed | Commercial In Confidence |
| Impact | Stratifying patients for treatment response |
| Title | Lithium PRELUDE trial |
| Description | We have shown that Lithium carbonate, while ineffective in ALS as a whole, is effective in people with a poor prognosis genetic variant in the UNC13A gene (homozygosity for the CC genotype). We are now seeking funding for a trial of lithium in patients with ALS who carry this poor prognosis variant. This will be a precision medicine approach in ALS. |
| Type | Therapeutic Intervention - Drug |
| Current Stage Of Development | Initial development |
| Year Development Stage Completed | 2019 |
| Development Status | Actively seeking support |
| Impact | The initial findings have been published, and if the trial confirms the analysis, this will become a new treatment for ALS. |
| URL | https://www.ncbi.nlm.nih.gov/pubmed/28978660 |
| Title | MIROCALS |
| Description | A clinical trial of low-dose interleukin-2 for amyotrophic lateral sclerosis, currently in a Phase 2 clinical trial, funded by Horizon 2020 and the MND Association |
| Type | Therapeutic Intervention - Drug |
| Current Stage Of Development | Early clinical assessment |
| Year Development Stage Completed | 2015 |
| Development Status | Under active development/distribution |
| Impact | The trial includes an assessment of Riluzole therapy, the first of its kind |
| URL | http://www.mirocals.eu/en/ |
| Title | Trial of Triumeq in ALS |
| Description | Triumeq is an antiretroviral combination drug used for HIV infection. We have shown in repeated studies, independently confirmed by others, that a generic signature of retroviral infection is present in the blood of people with ALS, and that this is likely to be from an endogenous retrovirus. A possible causative retrovirus was recently identified as HERV-K. Triumeq is 100 times more effective against HERV-K than against HIV. We are therefore actively seeking funding for a trial of Triumeq in ALS. |
| Type | Therapeutic Intervention - Drug |
| Current Stage Of Development | Initial development |
| Year Development Stage Completed | 2019 |
| Development Status | Actively seeking support |
| Impact | None yet |
| Title | ALSgenScanner |
| Description | ALSgeneScanner is a tool to allow neurologists to analyze whole genome sequence data for mutations specific to ALS and generates a detailed annotated report for each patient. |
| Type Of Technology | Software |
| Year Produced | 2019 |
| Open Source License? | Yes |
| Impact | It has only just been released, but has had a good reception on social media platforms (Twitter in particular). |
| URL | https://www.tandfonline.com/doi/full/10.1080/21678421.2018.1562553 |
| Title | DNAscan |
| Description | A fast, computationally and memory efficient bioinformatics pipeline for the analysis of DNA next-generation-sequencing data |
| Type Of Technology | Software |
| Year Produced | 2018 |
| Open Source License? | Yes |
| Impact | Improved analysis pipeline for the international Project MinE whole genome sequencing consortium (http://www.projectmine.com) |
| URL | https://www.biorxiv.org/content/early/2018/02/18/267195 |
| Title | Survival model for ALS |
| Description | A tool for predicting survival in ALS |
| Type Of Technology | Webtool/Application |
| Year Produced | 2018 |
| Impact | Use of the prediction tool for analysis of clinical trial phase 2 data |
| URL | http://www.encalssurvivalmodel.org |
| Title | Unique global ID for ALS research |
| Description | We have developed a tool to convert clinical information into a unique global ID using SHA2 encryption. The method allows sharing of IDs between research groups to identify duplicates or match participants, without breaking anonymisation. It uses a salt to protect against brute force breaking of anonymity. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2016 |
| Impact | This method is now being used across Europe in several studies including ALS-CarE, STRENGTH, the UK National MND Register and others, including retrospective application of the system to previous studies such as LiCALS and the UK MND DNA Bank, allowing further analyses to take place. |
| Description | 1st Meeting between WP1 partners (Stratification) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | 19/02/2015: Meeting between WP1 partners (internal KCL team) to update on progress with WP1 and discussion on future steps. |
| Year(s) Of Engagement Activity | 2015 |
| Description | 25th International Symposium on ALS/MND (Brussels) |
| 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 | At the International Symposium on ALS/MND this year over 800 people came together to hear the latest research findings. The 26th annual event was a truly international affair, with scientists and health professionals from over 30 countries attending. The clinical trials session was a great example of this and featured presentations from Japanese, American and South Korean researchers. Everyone who attended the Symposium was encouraged by the biomedical and care research that was discussed, including interesting conversations on how we classify MND, and how MND originates and spreads from one part of the body to another. There was a particularly thought provoking session on the way neurologists communicate a diagnosis of MND, put very eloquently by Juliet Jacobsen as 'delivering the horrible information in a hopeful way'. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.mndassociation.org/research/international-symposium/ |
| Description | 26th International Symposium on ALS/MND (Orlando) |
| 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 | The symposium is the largest medical and scientific conference specific to MND and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management. Each year, the symposium attracts over 800 delegates, representing the energy and dynamism of the global MND research community. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.encals.eu/past-meeting/encals-satellite-meeting-2015-orlando/ |
| Description | 2nd Joint JPND Consortia Meeting, Utrecht (the Netherlands) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | A four day JPND meeting was held from 2-5th September 2015 in UMC Utrecht, The Netherlands, which included a day dedicated to STRENGTH. Updates on progress were heard from the various work package leaders and future plans were discussed. |
| Year(s) Of Engagement Activity | 2015 |
| Description | 2nd Meeting between WP1 partners (Stratification) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | 26/02/15: Meeting between WP1 partners (internal KCL team) to discuss development of the improved latent class classification system. |
| Year(s) Of Engagement Activity | 2015 |
| Description | 3rd Meeting between WP1 partners (Stratification) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | 03/07/2015: Meeting between WP1 partners (internal KCL team) to discuss development of the prediction algorithm. |
| Year(s) Of Engagement Activity | 2015 |
| Description | ALS Debate 2019 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Debate on Genetics vs Environment in ALS |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.alsmndinnovation.com/Home/Event/6 |
| Description | Addressing the All Party Parliamentary Group on MND |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Presentation to the APPG on MND regarding our campaign for a step change in the quantity and nature of research funding for MND. Presented on 3 occasions. Attended by multiple politicians on each occasion. As a result, parliamentary questions were asked on our behalf and government policy was changed. |
| Year(s) Of Engagement Activity | 2021,2022 |
| URL | https://www.mndassociation.org/get-involved/campaigning/take-action/united-to-end-mnd/ |
| Description | Addressing the All Party Parliamentary Group on MND |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Spoke on MND research at the APPG on MND in December 2022 |
| Year(s) Of Engagement Activity | 2022 |
| Description | Amsterdam City Swim 2015 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Professor Ammar Al-Chalabi took part in the 2 km Amsterdam City Swim 2015 which took place on Sunday, 06 September in Amsterdam's Central Canal and successfully raised £540.00 for the Motor Neurone Disease Association. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.justgiving.com/AmmarAl-Chalabi |
| Description | Ask the Experts Panel at International Symposium |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A live audience and online audience watched a presentation and then asked questions on ALS research |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://www.youtube.com/watch?v=U98WU4Zzu8s |
| Description | BRAIN-MEND twitter account |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | BRAIN-MEND has a Twitter account which was launched at the International ALS Symposium in Glasgow in December 2018 and will be used to disseminate research findings to academics and the general public. |
| Year(s) Of Engagement Activity | 2018 |
| Description | BioData World Congress 2017, Cambridge |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | BioData World Congress 2018 brings together key stakeholders from across the life science and technology industry to discuss and debate how to come together to improve efficiencies within bio IT and biodata to the benefit of patients worldwide. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.terrapinn.com/conference/biodata/agenda.stm |
| Description | Broadcast news items on new gene discoveries |
| 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 | Media (as a channel to the public) |
| Results and Impact | Interviews with BBC World (live TV interview), ITV News (recorded TV), Channel 5 News (recorded TV), BBC Radio London (live radio) and others. Example URL below |
| Year(s) Of Engagement Activity | 2015,2016 |
| URL | https://twitter.com/ammaralchalabi/status/758321315698933760 |
| Description | Consortium meeting at the European ALS conference ENCALS, Ljubljana, May 2017 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Updates on progress were heard from the various work package leaders and future plans were discussed. |
| Year(s) Of Engagement Activity | 2017 |
| Description | ENCALS meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | About 50 people attended the European Network for the Cure of ALS satellite meeting at the International ALS Symposium in Dublin. There was significant discussion around clinical staging, multistep models, and genetics of ALS |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.encals.eu/wp-content/uploads/2016/09/20161206-program-ENCALS-satellite-Dublin.pdf |
| Description | ENCALS meeting 2014 Leuven |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | ENCALS is a network of ALS centres in Europe. It was established to help develop the standards of clinical and biomedical MND research across Europe and create a more collaborative environment for researchers, industry, funding agencies and Patient Associations. However, the meeting had a very transatlantic flavour, thanks to the participation of several of the leading researchers from North America. With around 40 speakers, as well as numerous poster presentations, there is too much to cover in a few hundred words, so I'll focus on just a few of the key themes that were covered. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.encals.eu/past-meeting/encals-meeting-2014-leuven/ |
| Description | ENCALS meeting 2015 Dublin |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | The ENCALS meeting is an important forum for the European MND community. The aim of the meeting is to encourage younger researchers to present their data, and to meet and interact with more established members of the community. The program highlighted state-of the-art science and clinical practice in the field of ALS. The focus was on Genes and Genomics, Cognition, C9orf72 and Novel Therapeutics, Imaging, TDP: RNA Metabolism and Disease Pathogenesis, Disease Models and Pathogenesis and Novel Biomarkers. Top international speakers provided cutting edge overviews. The meeting in Dublin was a great success with over 30 oral presentations and 80 poster presentations and many opportunities for young researchers to enhance their network. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.encals.eu/news/encals-meeting-2015-dublin/ |
| Description | Epigenetics Conference call between UK1, UK2 and GER |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | 11/06/2015: WP4 Conference call between UK1, UK2 and GER to discuss logistics of the sample collection between Essex and Ulm for the methylation analysis and update on miRNA profiling. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Epigenetics Conference call between UK1, UK2 and GER |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | 21/07/2015: WP4 Conference call between UK1, UK2 and GER to discuss progress on methylation analysis and cost to perform miRNA analysis on the 50 long and short survivors. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Epigenetics Conference call between UK1, UK2 and GER |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | 18/08/2015: WP4 Conference call between UK1, UK2 and GER to miRNA, mRNA and methylomic profiles in ALS and subgroups, profiles of normal ageing and profiles of serial spinal cord sections in ALS. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Epigenetics Conference call between UK1, UK2 and GER |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | 27/1/15: WP4 Conference call between UK1, UK2 and GER on progress being made on sample collection for the methylation analysis, miRNA profiling. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Face to face meetings with the WP5 (Interaction analysis) team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | Face to face meetings with consortium partners involved in Work Package 5 to analyse results of the generated datasets and the outcomes of Interaction Analysis. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Face to face meetings with the WP5 (Interaction analysis) team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | The Work Package 5 team met multiple times to discuss and agree on the statistical modelling of ALS phenotypic, genetic, epigenetic and environmental factors. |
| Year(s) Of Engagement Activity | 2017 |
| Description | Final Consortium meeting at the international ALS Symposium, Boston, December 2017 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | All STRENGTH project partners were present. Summary of progress was heard from the various work package leaders and future plans were discussed. Project partners also discussed future research plans to continue STRENGTH research concept. |
| Year(s) Of Engagement Activity | 2017 |
| Description | General research dissemination videos on YouTube |
| 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 | Public/other audiences |
| Results and Impact | Multiple videos on YouTube, responding to interviews on ALS research |
| Year(s) Of Engagement Activity | 2014,2015,2016 |
| URL | https://www.youtube.com/results?search_query=ammar+al-chalabi+als |
| Description | Genetics Meeting with KCL team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | 04/12/2015: WP2 Meeting with KCL team to discuss task 2.3 and 2.4. |
| Year(s) Of Engagement Activity | 2015 |
| Description | Ice Bucket Challenge Al-Chalabi Laboratory |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Ice Bucket Challenge promoted awareness of ALS and encouraged donations to research. The challenge was filmed and Professor Al-Chalabi nominated other ALS researchers to do the same. A common stipulation is that nominated participants have 24 hours to comply or forfeit by way of a charitable financial donation. |
| Year(s) Of Engagement Activity | 2014 |
| Description | JNNP Podcast |
| 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 | Professional Practitioners |
| Results and Impact | I was interviewed for a podcast about our recent finding that genetic variants that increase ALS risk, also lower the age of onset. Our paper was Editor's Choice. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Joint JPND Consortia Meeting, London Heathrow |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Joint JPND Consortia Meeting, 06 - 07 October 2014, London Heathrow: In October 2014 a 1.5-day Joint JPND Consortia Meeting was organized by Project Coordinator (UK1) in London Heathrow, UK. The new format of involving four different JPND-funded project consortia (STRENGTH, SOPHIA, ALS-CarE and NEEDS in ALS) and compiling a meeting programme out of thematic sessions across four projects was a great success and all project coordinators are willing to continue this in the future. Fifty stakeholders including project coordinators, project partners, external collaborators, as well as special guests attended the sessions over two days in London. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Keynote presentation at International Symposium of ALS/MND Associations |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Extensive discussion of the content Invitations to speak at further conferences, two invitations to write reviews for Nature Reviews Neurology (both taken up), invitation to submit paper to Lancet Neurology and to visit the offices. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Kick-Off Meeting AUSTRALIA, 23 March 2018, Melbourne, Australia |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Prof Ammar Al-Chalabi and Prof Jan Veldink represented the BRAIN-MEND Consortium to meet up with the Australian partners at the International Symposium on ALS/MND to discuss the governance of the project and plan for 2018. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Kick-Off Meeting EUROPE, 25 May 2018, London, UK |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | After the official start of the project, the Project Coordinator organised the BRAIN-MEND Kick-Off meeting for the European partners of project BRAIN-MEND which took place at King's College London, UK on 25 May 2018. All Consortium members were present and each WP leader presented their plan for respective Work Package. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Lecture tour for researchers, patients and clinicians to South America |
| 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 | Lectures and Question and Answer sessions were held at several locations in Uruguay and Argentina, including a university in Montevideo, 3 universities in Buenos Aires region, and a hotel in Buenos Aires city. The sessions included simultaneous translation Spanish and English and were live streamed on Facebook, as well as remaining available now. The question and answer session was with patients and carers, and lasted nearly two hours. The entire trip was coordinated by the ELA Association, a South American ALS association, which is now affiliated with the international alliance of ALS/MND Associations. |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://www.asociacionela.org.ar/index.php/pregunta-a-los-expertos-1 |
| Description | MND Connect |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Patient-researcher-clinician question and answer session also live-streamed |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.youtube.com/watch?v=KRb1HWv08gQ |
| Description | MNDA Annual General Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Multiple questions and email contacts from patients and carers. Multiple enquiries in how to participate actively in research |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://new.livestream.com/eventstreamingcompany/mnda/videos/61912991 |
| Description | MNDA Legacy Event 2019 |
| Form Of Engagement Activity | Participation in an open day or visit at my research institution |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Tour of labs and clinics with talks by researchers and clinicians |
| Year(s) Of Engagement Activity | 2019 |
| Description | MNDA Legacy Event September 2018 |
| 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 | The event was to educate the general public and those engaged with the MND Association about the research done that is funded by the MNDA, with the aim of increasing knowledge and encouraging a legacy to such research, |
| Year(s) Of Engagement Activity | 2018 |
| Description | MNDA Legacy Event at King's College London |
| 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 | Patients, carers and/or patient groups |
| Results and Impact | Between 40 and 70 people attended each event, consisting of research presentations, a tour of the labs, and an Ask the Experts session. The events were to raise awareness of our research, to improve donations to the patient organisation (MNDA), and to improve public understanding of our clinical and research programme. Increased donations have been reported, and feedback shows a high demand for future events. |
| Year(s) Of Engagement Activity | 2017,2018 |
| Description | MNDA Legacy Video |
| 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 | Public/other audiences |
| Results and Impact | During the MNDA legacy event a video was shot with the purpose of engaging with the public as much as possible. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://youtu.be/gbESPsGZyZo |
| Description | MNDA information video on our research |
| 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 | Public/other audiences |
| Results and Impact | A YouTube video posted also on the Motor Neurone Disease Association website, describing our research. |
| Year(s) Of Engagement Activity | 2016 |
| URL | https://youtu.be/tKz81aFVB04 |
| Description | Media campaign over months for an MND Translational Research Institute |
| 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 | Media (as a channel to the public) |
| Results and Impact | An orchestrated campaign with multiple interviews on BBC Breakfast (three interviews), BBC radio channels, and the Sunday Express (was the Express campaign for several months, until success). The campaign was to influence government policy on research into motor neuron disease. Government agreed to fund a £50m 5 year vision for coordinated MND research nationally. The campaign has also been seen and copied in other countries and was described by Business Secretary Kwasi Kwarteng, as "a textbook parliamentary campaign". An example URL is given below but many exist. |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| URL | https://twitter.com/BBCBreakfast/status/1330796880888999938 |
| Description | Ministerial Roundtable on MND |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | This was a ministerial roundtable on MND convened by NIHR as a result of a parliamentary debate, itself a result of a petition and media campaign to improve MND research to a cure. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Ministerial Roundtable on MND |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | A ministerial roundtable on MND to discuss how to continue funding for the UK MND Research Institute |
| Year(s) Of Engagement Activity | 2023 |
| Description | Mitsubishi Tanabe Pharma workshop on clinical staging measures in ALS |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Industry/Business |
| Results and Impact | A formal workshop on different outcome measures for clinical trials in ALS, and specifically the benefits of clinical staging systems. Clinical staging (and specifically King's Clinical Staging for ALS) was regarded as a major benefit for clinical trials and the basis of a research output (two poster presentations and a platform presentation) from the pharmaceutical company at the December International ALS Symposium in Dublin. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.als.net/news/global-als-research-progress-a-report-from-2016-international-symposium-in-d... |
| Description | NIHR MND Engage |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A study day on PPI |
| Year(s) Of Engagement Activity | 2019 |
| Description | New Zealand Inaugural MND Talk |
| 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 | I gave the plenary talk at the inaugural MND New Zealand research symposium which sparked multiple questions and disussions |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://anzasw.nz/events/motor-neuron-disease-mnd-new-zealand-research-conference-2019/ |
| Description | Parliamentary Debate on MND Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | On 12 July 2021, a parliamentary debate was held on our vision for a UK MND Translational Research Institute. This was a vision initially started by two patients with me, and developed by a coalition of patients, patient charities, scientists and industry partners. The debate was one component of a campaign which led to agreed government funding of £50m over 5 years. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.youtube.com/watch?v=SgE1JfFrl20 |
| Description | STRENGTH Kick-Off Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Kick-Off Meeting, 24 January 2014, London Heathrow: After the official project start, the Project Coordinator (UK1) organised a STRENGTH Kick-Off meeting on 24 January 2014 at which the project consortium was officially presented. The meeting was held in London Heathrow, UK. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Scientific Advisory Board and Workshop for Platform Trials at the MGH Healey Center |
| 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 | Current clinical trials are performed sequentially in ALS, which is a very slow method for a devastating fatal disease. Platform trials offer a perpetual trial design, with 3:1 active to placebo participation, and multiple simultaneous trials, greatly accelerating drug discovery and improving patient participation. This board and series of workshops aims to make such trials a reality in ALS. |
| Year(s) Of Engagement Activity | 2018,2019 |
| Description | Second Consortium Meeting, 06 December 2018, Glasgow, Scotland |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | The second consortium meeting took place in Glasgow on 06 December 2018 at the International ALS Symposium. All project partners were represented. Updates on progress were heard from the various work package leaders and future plans were discussed. Project partners also discussed and agreed on a continued good strategic planning of next 12 months including regular WP team conference calls and internal meetings for UK partners. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Staging presentation at Cytokinetics meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | About 220 participants attended in person, with more attending online. This was a set of three presentations on outcome measures for ALS clinical trials, with major audience participation, including voting on different measures. The number of people stating they would incorporate clinical staging as a routine part of their everyday practice increased from 5% to 25% by the end of the discussion. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://alsmndmeasures.com/ |
| Description | Steering Group Teleconference 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 | This meeting was organised in order to discuss the direction of the register with experts in the field. Ten members of the steering group participated; several issues were addressed and new ideas stem from the conversation, which are now in the process of being realised. |
| Year(s) Of Engagement Activity | 2018 |
| Description | TRICALS training |
| 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 | Training in clinical staging for ALS for members of the TRICALS consortium. An analysis of responses from the training has been submitted for publication. |
| Year(s) Of Engagement Activity | 2014,2015,2016 |
| URL | https://www.tricals.org/#1487071717028 |
| Description | Teleconference with the Work Package 2 Team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Study participants or study members |
| Results and Impact | Team members from King's College London held a teleconference with WP2 members from the University of Queensland to update each other on the progress made within WP2 and discuss the next milestones for 2019. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Teleconference with the Work Package 4 Team |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Study participants or study members |
| Results and Impact | Team members from King's College London held a teleconference with WP4 members from the Trinity College Dublin to update each other on the progress made within WP4, and discuss the collaboration with colleagues from the School of Computer Science in Trinity College. Number of productive meetings with the English and Irish teams took place to discuss the plans for WP4 works in 2019. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Visit by the Secretary of State for Health and Social Care |
| 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 | Policymakers/politicians |
| Results and Impact | The SoS for Health and Social Care, Steve Barclay, visited our are and research centre, had a 15 minute private meeting with us, and interacted with staff, research students and media. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.kcl.ac.uk/news/secretary-of-state-for-health-and-social-care-visits-kings-college-london |
| Description | WP1 Conference call between UK1 (Stratification) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | 25/08/2015: WP1 Conference call between UK1 to analyse results of the generated data and discuss next steps in LCCA. |
| Year(s) Of Engagement Activity | 2015 |