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)
- Royal Holloway, University of London (Collaboration)
- Bath Spa University (Collaboration)
- Aarhus University Hospital (Collaboration)
- University of Dundee (Collaboration)
- Kiel University (Collaboration)
- IMPERIAL COLLEGE LONDON (Collaboration)
- UNIVERSITY OF OXFORD (Collaboration)
- University of Sussex (Collaboration)
- University of the West of England (Collaboration)
- University of Bath (Collaboration)
- Cardiff University (Collaboration)
- Lund University (Collaboration)
- University of Ghent (Collaboration)
- University of Bristol (Collaboration)
- Eli Lilly (United Kingdom) (Project Partner)
- AstraZeneca (United Kingdom) (Project Partner)
Publications
Van Rysewyk S
(2023)
Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses.
in British journal of pain
Barry AM
(2023)
Deep RNA-seq of male and female murine sensory neuron subtypes after nerve injury.
in Pain
Lischka A
(2023)
Genetic landscape of congenital insensitivity to pain and hereditary sensory and autonomic neuropathies.
in Brain : a journal of neurology
Meng W
(2023)
A Meta-Analysis of the Genome-Wide Association Studies on Two Genetically Correlated Phenotypes Suggests Four New Risk Loci for Headaches.
in Phenomics (Cham, Switzerland)
Smith B
(2023)
Patient engagement in pain research: no gain without the people in pain
in Pain
Baskozos G
(2023)
Introduction to a special issue on big data and pain.
in Pain reports
Crombez G
(2023)
The effect of psychological factors on pain outcomes: lessons learned for the next generation of research.
in Pain reports
Perez-Sanchez J
(2023)
A humanized chemogenetic system inhibits murine pain-related behavior and hyperactivity in human sensory neurons.
in Science translational medicine
Hébert HL
(2023)
Big data, big consortia, and pain: UK Biobank, PAINSTORM, and DOLORisk.
in Pain reports
Higgins C
(2023)
Cross-sectional study examining the epidemiology of chronic pain in Nepal.
in Pain reports
Hébert HL
(2023)
Development and external validation of multivariable risk models to predict incident and resolved neuropathic pain: a DOLORisk Dundee study.
in Journal of neurology
Themistocleous AC
(2023)
Investigating genotype-phenotype relationship of extreme neuropathic pain disorders in a UK national cohort.
in Brain communications
Faux P
(2023)
Neanderthal introgression in SCN9A impacts mechanical pain sensitivity
in Communications Biology
Van Cauwenberg J
(2023)
Lost without a cause: time to embrace causal thinking using Directed Acyclic Graphs (DAGs).
in The international journal of behavioral nutrition and physical activity
Baskozos G
(2023)
Epidemiology of neuropathic pain: an analysis of prevalence and associated factors in UK Biobank.
in Pain reports
Eid SA
(2023)
New perspectives in diabetic neuropathy.
in Neuron
Abbott MG
(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 : JPNS
Hébert HL
(2022)
Assessing the impact of a national clinical guideline for the management of chronic pain on opioid prescribing rates: a controlled interrupted time series analysis.
in Implementation science : IS
Gadd DA
(2022)
Integrated methylome and phenome study of the circulating proteome reveals markers pertinent to brain health.
in Nature communications
Elafros MA
(2022)
Towards prevention of diabetic peripheral neuropathy: clinical presentation, pathogenesis, and new treatments.
in The Lancet. Neurology
Baron R
(2022)
Maximizing treatment efficacy through patient stratification in neuropathic pain trials
in Nature Reviews Neurology
Fundaun J
(2022)
Types and Concentrations of Blood-Based Biomarkers in Adults With Peripheral Neuropathies: A Systematic Review and Meta-analysis.
in JAMA network open
Ridehalgh C
(2022)
Does peripheral neuroinflammation predict chronicity following whiplash injury? Protocol for a prospective cohort study.
in BMJ open
Perez-Sanchez J
(2022)
Harnessing bacterial toxins to treat pain.
in Nature neuroscience
Fundaun J
(2022)
Nerve pathology and neuropathic pain after whiplash injury: a systematic review and meta-analysis.
in Pain
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
Fundaun J
(2022)
The power of integrating data: advancing pain research using meta-analysis.
in Pain reports
Dawes JM
(2021)
Addressing the gender pain gap.
in Neuron
Shi L
(2021)
Identification of plasma proteins relating to brain neurodegeneration and vascular pathology in cognitively normal individuals
in Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring
Evans M
(2021)
Magnetic Resonance Imaging as a Biomarker in Diabetic and HIV-Associated Peripheral Neuropathy: A Systematic Review-Based Narrative
in Frontiers in Neuroscience
Title | PAINSTORM logo |
Description | The PAINSTORM logo was developed by Emma Rankin and Angela Gillies, MFA candidates 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 | 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 | 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 | 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 FORECAST and PAINSTORM |
Organisation | University of Oxford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | collaboration between FORECAST and PAINSTORM based on data sharing and harmonisation of cohorts. Also overlap of PPI activities. |
Collaborator Contribution | collaboration between FORECAST and PAINSTORM based on data sharing and harmonisation of cohorts. Also overlap of PPI activities. |
Impact | Multidisciplinary collaboration, including physiotherapists, neurologists, spinal orthopaedic surgeons, clincial psychologists, bioinformaticians, MR physicists, biomedical scientists, analytical chemists, patient insight partners |
Start Year | 2022 |
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 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 | 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 | 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 | 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 | 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 | 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 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 | PAINSTORM 2023 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 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 | 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 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 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 | 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 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 | • 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 |