MICA: Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM).
Lead Research Organisation:
University of Oxford
Department Name: Clinical Neurosciences
Abstract
This consortium brings together experts in Neuropathic pain (NeuP). NeuP affects 8% of the population and is caused by damage to the sensory nervous system (through conditions such as diabetes, chemotherapy and HIV). It is increasingly common as a consequence of the ageing population, increasing levels of diabetes and enhanced cancer survival.
NeuP has a major negative impact on quality of life. Unfortunately current management options are inadequate as they are only effective in a small subgroup of patients. Additionally, whilst NeuP impact is multidimensional, most research and clinical management in this area is separate rather than being interdisciplinary. They over emphasise pharmacological approaches, often associated with side effects, rather than taking a more holistic approach addressing the complex social and psychological aspects of NeuP.
To rectify this situation we need to understand the mechanisms driving NeuP in patients. In order to do so, PAINSTORM will use a broad range of approaches cutting across traditional disciplinary boundaries, to uncover the causes of NeuP and understand how they interact.
This inter-disciplinary collaboration will include people living with NeuP (embedding patient and public involvement), scientists from diverse clinical and scientific backgrounds, and industry expertise to help translate the research into effective, multifaceted interventions.
Our focus will be on studying people at risk of NeuP and following their progress over time. We will use a number of established cohorts, as well as recruiting new participants, and harmonise outcomes with national scale community studies.
A key question is understanding why some people are severely impacted by NeuP whilst others with a similar pattern of nerve damage are not. Hence we will identify the personal characteristics (such as age, gender and ethnicity), environmental/social and clinical factors which determine NeuP risk. We will identify and validate novel genetic risk factors for NeuP.
Tissue samples and patient-derived cells will be used to validate molecular pathways contributing to chronic NeuP and help develop blood biomarkers. These samples will be stored and made available to other researchers via a biobank. We will optimise measures to assess NeuP, including sensory profiling, application of remote monitoring and assessment of psychosocial factors to understand the impact of pain on daily activities (from self-care to work) and important conditions that are often associated with chronic pain such as depression, anxiety and poor sleep.
We will use innovative technologies, including brain, spinal cord and nerve imaging and electrophysiology, to directly assess the factors that drive NeuP. We will integrate this multi-dimensional dataset to understand the interaction between risk and protective factors. We will develop biomarkers, as a means to measure pain and how it changes over time, which can be applied to clinical practice and drug trials. We aim to improve targeting of existing therapies, as well as identifying and prioritising novel treatment targets.
We will engage key stakeholder groups including health professionals, people living with NeuP and industry at the outset and throughout PAINSTORM. Results will be widely disseminated through development of accessible databases, lay summaries, an accessible biobank and ongoing training of scientists and clinicians both within and external to our consortium to enhance impact. Our aim is that PAINSTORM should transform lives through our understanding and future interdisciplinary management of NeuP.
NeuP has a major negative impact on quality of life. Unfortunately current management options are inadequate as they are only effective in a small subgroup of patients. Additionally, whilst NeuP impact is multidimensional, most research and clinical management in this area is separate rather than being interdisciplinary. They over emphasise pharmacological approaches, often associated with side effects, rather than taking a more holistic approach addressing the complex social and psychological aspects of NeuP.
To rectify this situation we need to understand the mechanisms driving NeuP in patients. In order to do so, PAINSTORM will use a broad range of approaches cutting across traditional disciplinary boundaries, to uncover the causes of NeuP and understand how they interact.
This inter-disciplinary collaboration will include people living with NeuP (embedding patient and public involvement), scientists from diverse clinical and scientific backgrounds, and industry expertise to help translate the research into effective, multifaceted interventions.
Our focus will be on studying people at risk of NeuP and following their progress over time. We will use a number of established cohorts, as well as recruiting new participants, and harmonise outcomes with national scale community studies.
A key question is understanding why some people are severely impacted by NeuP whilst others with a similar pattern of nerve damage are not. Hence we will identify the personal characteristics (such as age, gender and ethnicity), environmental/social and clinical factors which determine NeuP risk. We will identify and validate novel genetic risk factors for NeuP.
Tissue samples and patient-derived cells will be used to validate molecular pathways contributing to chronic NeuP and help develop blood biomarkers. These samples will be stored and made available to other researchers via a biobank. We will optimise measures to assess NeuP, including sensory profiling, application of remote monitoring and assessment of psychosocial factors to understand the impact of pain on daily activities (from self-care to work) and important conditions that are often associated with chronic pain such as depression, anxiety and poor sleep.
We will use innovative technologies, including brain, spinal cord and nerve imaging and electrophysiology, to directly assess the factors that drive NeuP. We will integrate this multi-dimensional dataset to understand the interaction between risk and protective factors. We will develop biomarkers, as a means to measure pain and how it changes over time, which can be applied to clinical practice and drug trials. We aim to improve targeting of existing therapies, as well as identifying and prioritising novel treatment targets.
We will engage key stakeholder groups including health professionals, people living with NeuP and industry at the outset and throughout PAINSTORM. Results will be widely disseminated through development of accessible databases, lay summaries, an accessible biobank and ongoing training of scientists and clinicians both within and external to our consortium to enhance impact. Our aim is that PAINSTORM should transform lives through our understanding and future interdisciplinary management of NeuP.
Technical Summary
Neuropathic pain (NeuP) affects 8% of the population and prevalence is increasing due to the aging population, diabetes epidemic and enhanced cancer survival. It has a major negative impact on quality of life and current management options are inadequate due to poor efficacy and tolerability. PAINSTORM will bring together people living with NeuP, academics from diverse backgrounds, and industry in order to apply an inter-disciplinary approach to improve understanding and management of NeuP. Our focus will be prospective studies of people at risk of NeuP using established as well as new cohorts and harmonising outcomes with national scale community studies. We will identify the demographic, environmental/psychosocial and clinical factors which determine NeuP risk (both vulnerability and protective factors). We will validate and find novel genetic risk factors for NeuP. Tissue samples and patient-derived cells will be used to validate molecular pathways contributing to chronic NeuP and help develop blood biomarkers. We will optimise measures to assess NeuP in a person-centred manner, including sensory profiling, remote monitoring and assessment of psychosocial factors to understand the impact of pain on daily activities (from self-care to work) and important co-morbidities such as depression, anxiety and poor sleep. Functional brain and neural imaging as well as electrophysiology will be used to determine pathophysiological processes underlying NeuP. This multi-dimensional dataset will be integrated in order to understand the interaction between risk and protective factors, develop composite biomarkers, identify and prioritise novel treatment targets as well as improve the targeting of existing therapies. We will engage key stakeholder groups including health professionals, people living with NeuP and industry at the outset and throughout PAINSTORM. Our aim is that PAINSTORM will transform lives through our improved understanding and future management of NeuP.
Organisations
- University of Oxford (Lead Research Organisation)
- Versus Arthritis (Co-funder)
- Aarhus University (Collaboration)
- Technion - Israel Institute of Technology (Collaboration)
- University College London (Collaboration)
- KEELE UNIVERSITY (Collaboration)
- National Institute of Health and Medical Research (INSERM) (Collaboration)
- Bath Spa University (Collaboration)
- Royal Holloway, University of London (Collaboration)
- Aarhus University Hospital (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- Kiel University (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- Lund University (Collaboration)
- University of Sussex (Collaboration)
- University of the West of England (Collaboration)
- Cardiff University (Collaboration)
- University of Bath (Collaboration)
- University of Ghent (Collaboration)
- University of Queensland (Collaboration)
- UNIVERSITY OF DUNDEE (Collaboration)
- University of Bristol (Collaboration)
- Eli Lilly (United Kingdom) (Project Partner)
- AstraZeneca (United Kingdom) (Project Partner)
Publications

Abbott M
(2022)
Acute small fiber neuropathy after Oxford-AstraZeneca ChAdOx1-S vaccination: A report of three cases and review of the literature
in Journal of the Peripheral Nervous System

Baron R
(2023)
Maximizing treatment efficacy through patient stratification in neuropathic pain trials.
in Nature reviews. Neurology

Barry AM
(2023)
Deep RNA-seq of male and female murine sensory neuron subtypes after nerve injury.
in Pain


Baskozos G
(2023)
Epidemiology of neuropathic pain: an analysis of prevalence and associated factors in UK Biobank.
in Pain reports

Baskozos G
(2023)
Introduction to a special issue on big data and pain.
in Pain reports

Baskozos G
(2022)
Classification of painful or painless diabetic peripheral neuropathy and identification of the most powerful predictors using machine learning models in large cross-sectional cohorts.
in BMC medical informatics and decision making
Title | PAINSTORM logo |
Description | The PAINSTORM logo was developed by Emma Rankin, MFA candidate in Art, Science and Visual Thinking from the Duncan of Jordanstone College of Art & Design at the University of Dundee. The logo aims to represent not only pain, but also hope: the image begins from a central point that evokes a tangle of nerve endings, and unwinds towards a representation of lights, which will call to mind the journey from illness to recovery. |
Type Of Art | Artwork |
Year Produced | 2021 |
Impact | The logo gives PAINSTORM a distinct, recognisable identity, which is valuable for public engagement. |
Description | Joint European Academy of Neurology-European Pain Federation-Neuropathic Pain Special Interest Group of the International Association for the Study of Pain guidelines on neuropathic pain assessment |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | Lead of the sciatica working group commissioned by the Neuropathic Pain Special Interest Group of the International Association for the Study of Pain |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Participation in a guidance/advisory committee |
Description | Member on International Consortium for Non-Hospitalised Road Traffic Injuries |
Geographic Reach | Multiple continents/international |
Policy Influence Type | Participation in a guidance/advisory committee |
URL | https://cre-rfrti.centre.uq.edu.au/our-people/international-consortium |
Description | A Novel Artificial Intelligence Powered Neuroimaging Biomarker for Chronic Pain. |
Amount | £445,541 (GBP) |
Funding ID | EP/Y017544/1 |
Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
Sector | Public |
Country | United Kingdom |
Start | 09/2023 |
End | 04/2025 |
Description | FORECAST: Advanced Pain Discovery Platform |
Amount | £578,221 (GBP) |
Funding ID | MR/W027003/1 |
Organisation | United Kingdom Research and Innovation |
Sector | Public |
Country | United Kingdom |
Start | 04/2022 |
End | 05/2025 |
Description | PharRmacoepidemiology Of NEuropathic Pain (PRONE): Identifying predictors of neuropathic pain medication prescribing and response in diabetic peripheral neuropathy |
Amount | £97,636 (GBP) |
Funding ID | WKR0-2022-0028 |
Organisation | National Institute of Academic Anaesthesia |
Sector | Academic/University |
Country | United Kingdom |
Start | 08/2023 |
End | 09/2026 |
Description | Understanding the impact of the national change in gabapentinoid classification and the risk factors for serious harms |
Amount | £90,809 (GBP) |
Funding ID | WKR0-2022-0010 |
Organisation | National Institute of Academic Anaesthesia |
Sector | Academic/University |
Country | United Kingdom |
Start | 03/2023 |
End | 04/2024 |
Title | APDP legacy biobank FORECAST and PAINSTORM |
Description | This legacy biobank assures tissue legacy storage of centres involved in the Painstorm and FORECAST teams of APDP. The samples which are linked with the clinical phenotype (alleviate database) will facilitate future research and collaborations. |
Type Of Material | Database/Collection of data |
Year Produced | 2024 |
Provided To Others? | Yes |
Impact | samples in the legacy biobank will be made available to other researchers upon completion of the APDP grants. |
Title | Pain RNAseq Hub |
Description | The Pain RNAseq Hub (PRH) is a Shiny App designed for hosting and visualising bulk and spatial RNA sequencing data in neuropathic pain-related studies. The database currently contains 10 bulk RNA seq experiments and 1 spatial scRNA seq experiment. It allows for exploration of transcriptomic changes in the context of gene expression and will also include protein-protein interaction networks in the future, with downloadable plots and tables and reproducible code tracking for customization and reproducibility. In addition, it provides a flexible and easy-to-understand code template for hosting high-throughput sequencing data and encourages researchers with varying computational expertise to build similar apps to improve data sharing and utilisation. |
Type Of Material | Database/Collection of data |
Year Produced | 2023 |
Provided To Others? | Yes |
Impact | The Pain RNAseq Hub (PRH) is a significant step towards integrating pain-associated RNA sequencing datasets and generating grouped visualizations of pain-related genes. In particular, this database provides researchers with a useful tool for interactive gene expression visualisation across multiple, cross-species sequencing data, allowing for comparison between different species, tissue origins, sexes, and pain models. The cross-species comparison allows for effective target selection, increasing the clinical translatability of experiments using rodents. By providing a flexible and reproducible code template, the database encourages data sharing, accessibility, and transparency in the pain research community, ultimately leading to better data utilisation and a reduced need for animal models, while increasing the effectiveness of past studies. |
URL | https://livedataoxford.shinyapps.io/drg-directory/ |
Description | Collaboration between PAINSTORM and Alleviate |
Organisation | University of Dundee |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We will contribute the PAINSTORM data, in an anonymised format, to the Alleviate project, as well as our expertise on data related to neuropathic pain. Several PAINSTORM members are also members of the Alleviate consortium. |
Collaborator Contribution | Alleviate is the APDP Pain Research Data Hub. Alleviate will transform UK pain datasets, including the PAINSTORM dataset, to be Findable, Accessible, Interoperable and Reusable (FAIR), and provide expert data engineering, to enhance responsible, timely and trustworthy analysis by researchers and innovators. |
Impact | This is a multi-disciplinary collaboration, involving clinicians, psychologists, geneticists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | Bath Spa University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | Cardiff University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | Keele University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | Royal Holloway, University of London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | University College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | University of Bath |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | University of Bristol |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and CRISPP consortium |
Organisation | University of the West of England |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is on the advisory board for the UKRI/Versus Arthritis funded APDP CRISPP consortium led by Professor Ed Keogh. Professor Crombez along with other members of PAINSTORM will work with the CRISPP consortium to harmonize psychosocial measurement/models where possible. |
Collaborator Contribution | Findings from the CRISPP consortium will be drawn upon particularly in the psychosocial work package of PAINSTORM to further develop or conceptual models and assessment approaches. |
Impact | This collaboration is multidisciplinary and includes clinicians, psychologists, social scientists, and data scientists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | Aarhus University |
Country | Denmark |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | Aarhus University Hospital |
Country | Denmark |
Sector | Hospitals |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | Imperial College London |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | Lund University |
Country | Sweden |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | National Institute of Health and Medical Research (INSERM) |
Country | France |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | Technion - Israel Institute of Technology |
Country | Israel |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | University of Dundee |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | University of Ghent |
Country | Belgium |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | University of Kiel |
Country | Germany |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and DOLORisk |
Organisation | University of Oxford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We will follow up some of the cross-sectional cohorts recruited in DOLORisk, a Horizon 2020-funded project (2015-2020). The longitudinal design of PAINSTORM will allow us to expand the understanding of neuropathic pain that was achieved in the DOLORisk project and draw new conclusions on risk and protective factors. |
Collaborator Contribution | Some baseline phenotypic data will be provided by DOLORisk and we will aim to follow up these participants after 2 years and 5 years. We will also be able to use the genetic data generated in DOLORisk to add to the PAINSTORM cohorts and replicate these results. The DOLORisk study protocol forms the basis of the PAINSTORM common protocol for deep phenotyping of participants. |
Impact | It is multi-disciplinary including clinicians, geneticists and psychologists. |
Start Year | 2021 |
Description | Collaboration between PAINSTORM and the APDP-funded Chronic High Impact Pain Project (CHIIP) |
Organisation | Keele University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Professor Geert Crombez is a co-applicant on CHIPP. Professor Crombez and Dr Annick de Paepe contribute expertise on causal modelling (Directed Acyclic Graphs) and the theory and measurement of psychosocial factors. |
Collaborator Contribution | This collaboration is providing multidisciplinary intellectual input to better understand the factors that contribute to high impact chronic pain. |
Impact | Dr Annick de Paepe has delivered a workshop on Directed Acyclic Graphs for CHIIP. |
Start Year | 2022 |
Description | Collaboration sciatica research priority setting |
Organisation | Keele University |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | collaborative team to perform research priority setting. I am responsible for guiding the team in its endeavours. |
Collaborator Contribution | partners are equal contributors to the team, |
Impact | received funding to do PPI activity. |
Start Year | 2023 |
Description | Collaboration with University of Sussex on multi centre whiplash cohort |
Organisation | University of Sussex |
Department | Brighton and Sussex Medical School |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | This project is part of a multi centre cohort study in collaboration with the University of Sussex (Prof Andrew Dilley). Half of the participants' data are being collected in Brighton, and half in Oxford. Oxford has been leading on the question relating to small fibre degeneration and its prognostic ability after whiplash injury. We have trained the Brighton team in skin biopsy acquisition and processing. |
Collaborator Contribution | This project is part of a multi centre cohort study in collaboration with the University of Sussex (Prof Andrew Dilley). Half of the participants' data are being collected in Brighton, and half in Oxford. Brighton has the lead of the Versus Arthritis funded project onto which this project is added to. |
Impact | 1. publication in PAIN: • Fundaun J, Kolski M, Baskozos G, Dilley A, Sterling M, Schmid AB. Nerve pathology and neuropathic pain after whiplash injury: a systematic review and meta-analysis. Pain 2021; online ahead of print. this is a multidisciplinary collaboration, including Physiotherapists, MR physicists, statisticians and neurophysiologists. |
Start Year | 2020 |
Description | collaboration between APDP FORECAST and PAINSTORM consortium |
Organisation | University of Oxford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | The whiplash cohort has been added to the Advanced Pain Discovery Platform funded PAINSTORM consortium. |
Collaborator Contribution | The industry partner of PAINSTORM (Eli Lilly) will provide in-kind provision of neurofilament light chain evaluation in blood of patients after whiplash injury as a marker of neuronal injury. |
Impact | This is an interdisciplinary collaboration involving academia and industry. no outputs as yet, as we are still finalising data collection |
Start Year | 2022 |
Description | nerve involvement after whiplash injury |
Organisation | University of Queensland |
Country | Australia |
Sector | Academic/University |
PI Contribution | we have together applied for an Australian Grant to examine the temporal development of nerve injury after whiplash injury. |
Collaborator Contribution | Prof Michele Sterline and Dr Scott Farrell are leading this project |
Impact | successful grant application in Australia. study currently still ongoing |
Start Year | 2021 |
Description | "Expressions of Pain" - Public Workshop (Art and Science) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Around 50 people, including those living with pain, carers, and healthcare professionals, explored methods of expressing pain through artistic media, to complement formal "scientific" methods. This included a visual art workshop and a writing workshop led by professional artists, and an art gallery tour. Event held at Aberdeen Art Gallery, as part of British Science Week. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.eventbrite.co.uk/e/expressions-of-pain-british-science-week-event-tickets-542778664597?f... |
Description | 'TRANSLATIONAL RESEARCH INTO CAUSES OF NEUROPATHIC PAIN' presentation at world congress of neurology Montreal, 8th Oct 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | This a lecture as part of a highly interactive workshop on neuropathic pain and I emphasised teh importance of interactions between different risk factors. |
Year(s) Of Engagement Activity | 2023 |
Description | 21-22 June 2023: Two presentations at an expert meeting on formalizing knowledge in Leuven (Belgium) |
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 | The first presentation generated discussion about the role of causal modelling in clinical/health psychology. The second focused on the content validity of common self-report questionnaires generated discussion about how to improve these. |
Year(s) Of Engagement Activity | 2023 |
URL | https://osf.io/r594q/ |
Description | 7 June 2023 workshop on causal directed acyclic graphs in London for the PAINSTORM consortium |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | PAINSTORM investigators across the work packages attended a workshop to learn about causal directed acyclic graphs and to discuss other approaches to statistical modelling for application within PAINTORM. |
Year(s) Of Engagement Activity | 2023 |
Description | APDP Genetics working group |
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 | PAINSTORM, ADVANTAGE, Eli Lilly, and AstraZeneca formed a working group within the Advanced Pain Discovery Platform to discuss the different types of genetics work planned by each partner and identify areas of collaboration. We discussed harmonisation of case definitions, sequencing and analysis techniques we plan to use, and how to involve patient partners in this work. |
Year(s) Of Engagement Activity | 2022,2023 |
Description | APDP Whiplash poster |
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 | Poster presentation regarding updates about our whiplash project. This included discussions and interactions with patient partners, industry executives, and other researchers in the field of pain. |
Year(s) Of Engagement Activity | 2023 |
Description | APDP conference 2023 - poster presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Sharing two posters outlining the FORECAST study protocol, and an interim cohort description at mid-recruitment. Opportunity for networking and exchange of ideas with researchers across the APDP and also patient partners and representatives. |
Year(s) Of Engagement Activity | 2023 |
Description | CAHPR conference - oral and poster presentations |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Sharing interim FORECAST findings via local AHP research group via oral and poster presentations. Networking opportunity for engaging local clinicians in research and discussion, and exchanging ideas with other AHP researchers. |
Year(s) Of Engagement Activity | 2023 |
Description | Chairing of a debate on pre-clinical models of diabetic neuropathy. NeupSIG Lisbon 8th sept 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | This was a highly interactive debate on the models that can be used to study painful diabetic neuropathy. This proved highly educational and actually a survey pre and post debate showed a change in views of the audience. |
Year(s) Of Engagement Activity | 2023 |
Description | Clinical masterclass in peripheral neuropathy 23.5.22, Royal Society of Medicine |
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 was a panel discussion and question and answer session on understanding and management of peripheral neuropathy. This included patient partners and was a very engaging and interactive session. |
Year(s) Of Engagement Activity | 2022 |
Description | DOLORisk 2023 meeting (19-20 November 2023) |
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 | The researchers and industry partners of the DOLORisk consortium met in Oxford to discuss work done since the project ended and future collaboration opportunities. As PAINSTORM involves some of the same institutions and follows up participants recruited in DOLORisk, this gave the opportunity to introduce the project to the non-UK DOLORisk partners and to draw links between past activities and ongoing work. |
Year(s) Of Engagement Activity | 2023 |
Description | Directed acyclic graph development workshop with CHIPP patient partners (14 November 2023) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Online workshop with individuals with lived experience of chronic pain to further develop the directed acyclic graph on the influence of executive functioning on the maintenance of chronic high impact pain. This was in collaboration with the CHIPP project which is also part of the Advanced Pain Discovery Platform. |
Year(s) Of Engagement Activity | 2023 |
Description | Directed acyclic graph development workshop with CHIPP project group (9-10 October 2023) |
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 | Contributed to workshop (held in Brussels, Belgium) to develop a directed acyclic graph focused on the influence of executive functioning on the maintenance of chronic high impact pain as part of the CHIPP project which is also part of the Advanced Pain Discovery Platform. |
Year(s) Of Engagement Activity | 2023 |
Description | Discussant at the annual conference of European Health Psychology Society (EHPS) in Bremen, Germany (8 September) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Gave a presentation entitled, "Double, double, measurement problem, sorry to burst your construct bubble". This generated discussion about limitations with the content validity of common self-report measures and how to improve this. |
Year(s) Of Engagement Activity | 2023 |
Description | European College of Gerodontology (ECG) young members webinar |
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 | Presented an introduction on how to use Directed Acyclic Graphs to guide research which generated discussion. |
Year(s) Of Engagement Activity | 2022 |
Description | Expressions of Pain |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Public/other audiences |
Results and Impact | While everyone has experienced pain at some point in their life, not all pain is experienced the same way. Sometimes pain comes and goes, sometimes pain stays and never leaves. Pain has been expressed creatively in many different ways but how can we best communicate it? How can people living with pain find the best way to describe their own experience, so that they can help others understand what they are going through? 'Expressions of Pain' is a workshop where pain meets art and art meets pain. In this interactive workshop, the aim is to make the invisible, visible and we will do this by using different media to illustrate pain. The focus will be on neuropathic (nerve-related) pain. The three activities on offer in this workshop were: 1. E?xplore expressions of pain through art - paint & clay activities - Hosted by Emma Rankin, Angela Gillies, Dr Paul Harrison of Duncan of Jordanstone College of Art & Design, University of Dundee and Gordon Liddle, PAINSTORM Patient Partner 2. E?xplore expressions of pain through written word - Hosted by broadcaster, writer, speaker and PAINSTORM Patient Partner Fiona Talkington (BBC Radio 3) and Prof Blair Smith, University of Dundee 3. E?xplore the art exhibitions in the gallery and take part in discussions on what pain means to you & how pain can be expressed through artwork - Hosted by Prof Lesley Colvin, Dr Chris Lim of the University of Dundee, Dr Kathryn Martin of the University of Aberdeen and Jo Josh - PAINSTORM Patient Partner. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.eventbrite.co.uk/e/expressions-of-pain-british-science-week-event-tickets-542778664597 |
Description | FORECAST Newsletter |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Study participants or study members |
Results and Impact | Termly FORECAST newsletter distributing our findings, progress and updated on the study. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.ndcn.ox.ac.uk/research/neuromusculoskeletal-health-and-science-lab/research-projects/fac... |
Description | First episode of PAINCAST - the podcast of the PAINSTORM consortium |
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 | PAINCAST is a creative podcast from the PAINSTORM research team exploring the experience of neuropathic pain. It's a novel collaboration between people living with chronic neuropathic pain and medical researchers. The podcast is presented and co-produced by BBC Radio presenter and writer Fiona Talkington, who lives with neuropathic pain. In Episode 1 we hear: - How chronic neuropathic pain affects around 8% of the UK population, and usually occurs following damage or injury to the sensory nervous system; - David Bennett, professor of neurology and neurobiology at Oxford University, explains that the condition can be caused by conditions as varied as diabetes, HIV, chemotherapy for cancer treatment, or traumatic injury such as amputation; - How living with neuropathic pain can affect relationships; - Fiona speaks to Anusha Subramanyam, a dancer, teacher and dance movement therapist who has helped people living with chronic pain express their experiences of it through the medium of dance. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.painstorm.co.uk/paincast |
Description | From genes to analgesia. Meeting at the Royal Society (28.11.23) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | This was a 1 day meeting on the latest developments in pain research and especially those that may lead to novel treatments. Widely attended by industry and academia. |
Year(s) Of Engagement Activity | 2023 |
Description | Health Psychology Seminar at King's College London |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | Professor Geert Crombez delivered a seminar titled "The biopsychosocial model and where to go from here" which was chaired by Dr Whitney Scott. This generated meaningful discussion. |
Year(s) Of Engagement Activity | 2022 |
Description | IASP NeuPSIG Conference, Lisbon |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Presented updates regarding our whiplash project at the IASP Neuropathic Pain Special Interest group Conferences in Lisbon, Portugal including approximately 600 attendees. This poster presentation sparked discussions about the current evidence and future of whiplash research, involving patients, clinicians, researchers, and future collaborators. |
Year(s) Of Engagement Activity | 2023 |
Description | IASP poster - PPIE (BThakkar, K Martin, BH Smith, LA Colvin) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Bhushan Thakkar, Kathryn R Martin, Gillian Martin, Blair H. Smith, Lesley Colvin. "Patient Recruitment Strategies to Promote Inclusivity and Diversity in Neuropathic Pain Research." Poster presented at the International Association for the Study of Pain NeuPSIG 2023 conference. |
Year(s) Of Engagement Activity | 2023 |
Description | IASP workshop on Chemotherapy Induced Peripheral Neuropathy: Challenges and Progress - Lesley Colvin |
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 | Lesley Colvin. "Chemotherapy Induced Peripheral Neuropathy: Challenges and Progress". Workshop presented as part of the "Chemotherapy-induced Peripheral Neuropathy: Improving Translation from Lab to Lived Experience" session at the International Association for the Study of Pain NeuPSIG 2023 conference. |
Year(s) Of Engagement Activity | 2023 |
Description | IASP workshop on Diagnosis and Management of Neuropathic Cancer Pain - Lesley Colvin |
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 | Lesley Colvin. "Diagnosis and Management of Neuropathic Cancer Pain". Workshop presented as part of the Cancer Pain session at the International Association for the Study of Pain NeuPSIG 2023 conference. |
Year(s) Of Engagement Activity | 2023 |
Description | IASP workshop on Patient Lived Experience: Adding Value to Neuropathic Pain Research (Lesley Colvin, Blair H. Smith, Kathryn Martin, Gillian Martin and Joletta Belton) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Lesley Colvin, Blair H. Smith, Kathryn Martin, Gillian Martin and Joletta Belton. "Patient Lived Experience: Adding Value to Neuropathic Pain Research". Workshop presented at the International Association for the Study of Pain NeuPSIG 2023 conference. |
Year(s) Of Engagement Activity | 2023 |
URL | https://neupsig.arinex.one/events/sessions/patient-lived-experience-adding-value-to-neuropathic-pain... |
Description | International Association for the Study of Pain Virtual Congress, June, 2021. Poster. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | poster presentation at largest Conference of Pain worldwide. Engaged with attendees online and had stimulating discussions. |
Year(s) Of Engagement Activity | 2021 |
Description | Invited lecture on 'Painful neuropathies' to neurology dept. The University of Glasgow. 21.2.24 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | I gave a clinically focussed lecture to the neurology department of Glasgow University and linked hospitals. This discussed diagnostic and management approaches to painful neuropathy. This was followed b a lovely question and answer session. |
Year(s) Of Engagement Activity | 2024 |
Description | Invited speaker British Peripheral Nerve Society Annual Meeting |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | invited lecture at BPNS annual meeting. Sparked interesting discussions and networking. |
Year(s) Of Engagement Activity | 2022 |
Description | Lecture on 'Human pain chanelopathies' lecture at the National Institute of Health, Bethseda, Washington |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | This was an invited lecture on the fast evolving topic of human pain channelopathies. |
Year(s) Of Engagement Activity | 2024 |
Description | Lecture on painful diabetic neuropathy. NeupSIG meeting Lisbon 7.9.23 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | I gave a lecture on the latest understanding of developments in painful diabetic neuropathy. |
Year(s) Of Engagement Activity | 2023 |
Description | Medical Research Foundation 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 | Media (as a channel to the public) |
Results and Impact | Video created by the Medical Research Foundation to raise awareness of our project and results. Distributed through social media channels, reaching >4k views on my twitter account only. |
Year(s) Of Engagement Activity | 2023 |
Description | NeuPSig medication review meeting - Patient representation (F Talkington) |
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 | Fiona Talkington was patient representative at a NeuPSIG medication review meeting in January 2024, where she spoke about medications from the patient perspective. |
Year(s) Of Engagement Activity | 2024 |
Description | OxPain Oxford University Hospitals Whiplash research update |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | Approximately 50 clinicians and researchers interested in pain research attended a 2 hour series of presentations discussing wide ranging topics in painful conditions. This included clinicians, physicians, researchers and students. This event sparked many discussions about related topics of painful conditions, future areas of research, and initiated discussions with future collaborators. |
Year(s) Of Engagement Activity | 2023 |
Description | PAINSTORM 2022 annual meeting (23-24/06/2022) |
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 researchers, patient partners, and industry partners of the PAINSTORM consortium took part in an annual review meeting in Oxford. We discussed progress in each work package, patient and public engagement activities, plans for the next 12 months, and management. External scientific advisers also attended the meeting. |
Year(s) Of Engagement Activity | 2022 |
Description | PAINSTORM 2023 Annual Meeting (8-9 June 2023) |
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 researchers, patient partners, and industry partners of the PAINSTORM consortium took part in an annual review meeting in London. We discussed progress in each work package, patient and public engagement activities, plans for the next 12 months, and management. The scientific advisers also attended the meeting in person. |
Year(s) Of Engagement Activity | 2023 |
Description | PAINSTORM Harmonisation meeting (27/09/2021) |
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 | Members of the PAINSTORM consortium, in particular those involved in the recruitment of study participants and data handling, met to agree on the set of questionnaires that would form a common protocol to all PAINSTORM centres. The aim was to guarantee data harmonisation across the consortium. We based the protocols on the DOLORisk study, and discussed modifications and enhancements, especially in terms of better capturing the participants' lived experience of pain. The list of questionnaires was finalised in the weeks following the meeting. |
Year(s) Of Engagement Activity | 2021 |
Description | PAINSTORM Kick-off meeting (26/07/2021) |
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 | 30 members of the PAINSTORM consortium (academics, patient partners and industry partners) took part in an online kick-off meeting to go through the project's objectives and plans. We discussed management issues, went through each work package to define priorities for the first months of the project, and set out some principles for public and patient involvement. |
Year(s) Of Engagement Activity | 2021 |
Description | PAINSTORM website |
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 | The PAINSTORM website was published in 2023 and highlights our PPIE activities and information on the lived experience of neuropathic pain, as well as the research done in PAINSTORM. It will be an important communication and dissemination tool, allowing us to publish information about consortium news, events, outcomes, and activities. |
Year(s) Of Engagement Activity | 2023,2024 |
URL | https://www.painstorm.co.uk/ |
Description | Plenary Lecture at International Conference (Wellcome Connecting Science): Can population-based genetic studies phenotype chronic pain? |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Invited lecture in closing sessions of this international conference, held at Wellcome Genome Campus, Hinxton (Campbridge) and Virtual |
Year(s) Of Engagement Activity | 2023 |
URL | https://coursesandconferences.wellcomeconnectingscience.org/event/the-challenge-of-chronic-pain-from... |
Description | Poster - NHS Research Scotland Patient and Public Involvement Event (B Thakkar, J Fisher, HL Hebert, K Martin, BH Smith, LA Colvin) |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | Bhushan Thakkar, Dhaneesha N.S. Senaratne, Rubina Zafar, Satyavan McMillan, Gillian Martin, Judith Fisher, Harry L. Hebert, Kathryn Martin, Blair H. Smith, Lesley A. Colvin. "Patient and Public Involvement and Engagement (PPIE) to Facilitate Recruitment and Retention of Study Participants in Neuropathic Pain Clinical Trials: Findings from the PAINSTORM study." Poster presented at the NHS Research Scotland (NRS) and Chief Scientist Office (CSO) Patient and Public Involvement Event, March 2024. |
Year(s) Of Engagement Activity | 2024 |
Description | Poster - NHS Research Scotland Patient and Public Involvement Event (R Zafar, PAINSTORM Patient Advisory Group) |
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 | Presentation by Rubina Zafar, PAINSTORM Patient Advisor, at the NHS Research Scotland (NRS) and Chief Scientist Office (CSO) Patient and Public Involvement Event: 'Living with Cancer - Experience of engaging with people from minority ethnic communities and with lived experience of chemotherapy'. |
Year(s) Of Engagement Activity | 2024 |
Description | Pre-conference workshop at the annual ISBNPA meeting |
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 | This workshop focused on using Directed Acyclic Graphs to guide research, by providing an introduction, exercises and interactive discussions. |
Year(s) Of Engagement Activity | 2022 |
Description | Presentation at 13th congress of the European Pain Federation (EFIC), Budapest, Hungary (September 2023) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Presented a talk entitled, "Developments over time in the biopsychosocial model". This generated discussion about how to advance the model in the future. |
Year(s) Of Engagement Activity | 2023 |
URL | https://osf.io/xw39v/ |
Description | Presentation at the annual conference of European Health Psychology Society (EHPS) in Bremen, Germany (8 September 2023) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Gave a presentation entitled, 'Encouraging causal thinking in applied health research with causal directed acyclic graphs' at the annual EHPS scientific conference. This generated discussion on the use of directed acyclic graphs for causal modelling in health psychology. |
Year(s) Of Engagement Activity | 2023 |
Description | Presentation by Fiona Talkington at the International Association of Music and Medicine SIG 'Music and Chronic Pain' |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Fiona Talkington presented her MPhil thesis, "The Pain of Silence: The Silence of Pain" to the International Association of Music and Medicine Special Interest Group on 'Music and Chronic Pain'. |
Year(s) Of Engagement Activity | 2024 |
Description | Presentation on the use of 'Big Data' to a pain workshop at the Academy of Medical Sciences aimed at improving development of new analgesics. |
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 | This was a broad workshop organised by the Academy of Medical Sciences. The aim was to facilitate understanding of and develop new treatments for pain. It involved some lectures but also breakout session/workshop to discuss issues in the pain field. There were diverse participants which made for a very interactive discussion. |
Year(s) Of Engagement Activity | 2021 |
Description | Presentation on the use of iPSCs in neuropathic pain research at the NeupSIG satellite meeting 2022 Toronto. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | I presented how human iPSCs can be used in pain research. I gave the examples of modelling hereditary sensory neuropathy. This created lively debate about the pros ad cons of iPSCS. |
Year(s) Of Engagement Activity | 2022 |
Description | Talk and workshop to Glaxo Smith Kline on applying stratified medicine approaches to neuropathic pain |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Industry/Business |
Results and Impact | This was a dedicated lecture and then 1 hr workshop on how stratifying patients with neuropathic pain may help drug development. This has led GSK showing interest in joining the PAINSTORM consortium. |
Year(s) Of Engagement Activity | 2023 |
Description | Talk at Physio UK 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 talk at Physio UK conferences, presenting our data on the whiplash systematic review. Conference was held online due to COVID-19, which meant a larger audience could be reached. Sparked many questions and good discussions. |
Year(s) Of Engagement Activity | 2021 |
Description | Talk at the CRIISP consortium meeting in Bath |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Presented a talk on using causal diagrams which generate discussion about how this could be applied across the research of the APDP consortia. |
Year(s) Of Engagement Activity | 2022 |
Description | Talk to the New York Academy of Sciences |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | I gave the key note lecture at this international pain meeting. I focussed on ion channel mutations and their impact on pain sensitivity. I have also discussed implications for treatment. |
Year(s) Of Engagement Activity | 2022 |
Description | Talk to the international diabetic neuropathy consortium on the role of genetics in diabetic neuropathy. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | I presented the current state of the art as to the approach of using genetics in the pathophysiology of painful diabetic neuropathy. |
Year(s) Of Engagement Activity | 2022 |
Description | The millenium annual lecture delivered to the Pain Relief foundation. 31st March 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | This is the annual lecture on the topic of: Using a stratified medicine approach to improve understanding, diagnosis and treatment of Neuropathic Pain |
Year(s) Of Engagement Activity | 2023 |
Description | Workshop at the Department of Rehabilitation Sciences at Ghent University |
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 | Presented on using Directed Acyclic Graphs to guide research, which included an introduction, exercises, and interactive discussions. |
Year(s) Of Engagement Activity | 2022 |
Description | Workshop in London within a meeting of the CHIPP project (also part of the APDP) |
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 | Presented on using Directed Acyclic Graphs to guide research, which included an introduction, exercises and interactive discussions |
Year(s) Of Engagement Activity | 2023 |
Description | Workshop on developing causal directed acyclic graphs at Ghent University, Belgium (19 February 2023) |
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 | Workshop on causal directed acyclic graphs (DAGs) delivered at the Faculty of Psychology and Educational Sciences at Ghent University, Belgium. This developed interest and knowledge in the use of DAGs for causal modelling. |
Year(s) Of Engagement Activity | 2023 |
Description | Workshop organized for members of the Department of Experimental Clinical and Health psychology and the Department of Public Health and Primary care at Ghent University |
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 | Delivered a workshop on using Directed Acyclic Graphs to guide research which provided an introduction, exercises and interactive discussions. |
Year(s) Of Engagement Activity | 2022 |
Description | podcast tete a tete podcast |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | invited speaker on tete a tete podcast with Niklaus Haldimann, who interviews interesting people from diverse backgrounds. |
Year(s) Of Engagement Activity | 2022 |
URL | https://podcast-tete-a-tete.podigee.io |
Description | poster presentation EFIC conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | poster presentation on "Does peripheral neuroinflammation predict chronicity following whiplash injury? Protocol for a prospective cohort study. |
Year(s) Of Engagement Activity | 2022 |
Description | poster presentation IASP congress Toronto |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | poster presentation on systematic review of neurofilament light chain in patients with peripheral neuropathies. presented at largest international congress on Pain in Toronto 2022 |
Year(s) Of Engagement Activity | 2022 |
Description | presentation at online datablitz session IASP |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | competitively selected for Data Blitz Presentation for IASP. Presented whiplash systematic review and participated in question and answer session. This session reached an international audience and is still available online for members of IASP. |
Year(s) Of Engagement Activity | 2021 |
URL | https://www.iasp-pain.org/event/iasp-neupsig-data-blitz-group-3/ |
Description | tete a tete 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 | guest on tete a tete podcast related to neuropathic pain and entrapment neuropathies. International reach through social media. |
Year(s) Of Engagement Activity | 2023 |
URL | https://podcast-tete-a-tete.podigee.io/37-neue-episode |
Description | what is getting on your nerves: compression neuropathies: podcast BIB |
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 | podcast on Barbell and Bananas Podcast, talking about entrapment neuropathies including sciatica. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.podcast.de/episode/618249652/051-interview-mit-prof-dr-annina-schmid-was-geht-dir-auf-di... |
Description | • Local Cancer Network engagement |
Form Of Engagement Activity | A formal working group, expert panel or dialogue |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | • Local Cancer Network engagement - PPIE leads have attended meetings with the local cancer support network in Dundee. These meetings have representatives from Maggies, CanDu, Macmillan and Tayside Cancer Support. These meetings informed how to make the chemotherapy induced peripheral neuropathy (CIPN) PAINSTORM study (work package 1) accessible to the patient population. We have collaborated with the Maggies Centre to offer support to research participants to complete research questionnaires or to have a "study buddy" to discuss the research project with. We have also worked closely with people with lived experience of CIPN at CanDu, who have helped develop the participant information sheets in an understandable and accessible format, including a video PIS and a visual PIS. |
Year(s) Of Engagement Activity | 2022 |