PAINSTORM: working together to understand nerve pain 

Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms

The Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM) is a research project aiming to understand nerve pain. Nerve pain, known as neuropathic pain, happens when nerves are damaged or not working as they should. It can affect how people feel, move, sleep, work and take part in daily life. We want to understand why neuropathic pain happens, why it affects some people more than others, and how we can improve care and treatment. 

Research overview 

PAINSTORM brings together experts in neuropathic pain, people living with nerve pain and industry partners. Our aim is to improve the understanding of what causes neuropathic pain, and how can we use that knowledge to prevent it, measure it and treat it better. Our focus is on studying people at risk of neuropathic pain and following their progress over time. This matters because nerve pain can have a serious effect on daily life, and current treatments do not help everyone. 

What is the aim of this research? 

Our aim is to reach a new understanding of neuropathic pain by combining molecular, biological, and psychological approaches to describe its development and progression. We aim to find the risk factors involved and study the biological changes that lead to neuropathic pain including changes occurring in our nerves, our genes and the brain. We also want to create better ways to assess nerve pain, so that doctors and researchers can understand each person’s pain more clearly. 

Why is this research important? 

Neuropathic pain affects around 8% of the population. It can happen after nerve damage associated with diabetes, cancer treatment, HIV or other health conditions. As people live longer, and more people live with conditions such as diabetes, nerve pain is becoming more common. 

This research could help people living with nerve pain, their families, health professionals and researchers by understanding nerve pain better. Neuropathic pain can make everyday life difficult. This research will support people to get earlier help, better treatment choices and care that sees the whole person, not just their pain. 

What are we doing? 

The PAINSTORM project will focus on joining up different types of information so that researchers can look at neuropathic pain in a more complete way. This includes symptoms, personal experiences, health information, tissue samples and test results. We will bring together healthcare professionals, researchers, the pharmaceutical industry, and people living with neuropathic pain to meet the following goals: 

Recruitment of people with neuropathic pain 

We will standardise and expand existing groups of patients with or without risk of neuropathic pain. This will allow us and others to study risk and protective factors for neuropathic pain in a consistent and generalised way. It will also allow us to study why some people have severe pain while others with similar nerve damage do not. 

Improve the assessment of neuropathic pain and its impact on daily life 

We will characterise the lived experience of neuropathic pain with input from patient partners to ensure the relevance and acceptability of new measures for assessing neuropathic pain. We will follow some people over time to see how nerve pain starts, changes and affects their lives. 

Understand psychosocial risk and protective factors 

The precise role of psychosocial factors in explaining the severity of neuropathic pain are not well understood. We want to understand which psychosocial factors increase a person's risk for adverse outcomes like disability and distress related to neuropathic pain. We also want to understand what psychosocial factors protect people from having poorer pain outcomes. We will ask people about mood, sleep, work, self-care and other parts of daily life. 

Developing biological measures of neuropathic pain 

We will use innovative tools such as body scans, nerve tests and remote monitoring to study new treatment targets and inform the development of biological markers, known as biomarkers, for neuropathic pain. 

Genetic factors for neuropathic pain 

We will study which genes contribute to different types of neuropathic pain. This will help to identify the mechanisms at work behind the disease, develop better drugs, and assess an individual's risk of developing neuropathic pain. 

Biomarkers from human samples 

By using blood samples and skin biopsies taken from study participants, we will investigate the molecular pathways contributing to neuropathic pain. We will study whether these can be used as a biomarker for neuropathic pain. 

Generate accessible data resources 

We will build shared data resources and a biobank of tissues and cells, that approved researchers can use for future studies. This will help scientists to keep learning from the project after it ends. 

What have we learned so far? 

The PAINSTORM teams are still analysing the data from their research projects but some of our findings so far include: 

• We discovered SLC45A4 as a new pain gene and a new pain target. 
• We have demonstrated the association between female sex, social deprivation, anxiety, depression and personality factors and neuropathic pain. These are now being validated in long-term studies. 
• We are continuing to work with UK-Biobank to improve the characterisation known as phenotyping of chronic pain and have completed analysis on 160,000 participants. This is one of the most downloaded datasets in UK-Biobank. 
• We have uploaded a number of our neuropathic pain studies (for diabetic neuropathy and carpal tunnel syndrome) to the Alleviate pain data hub which is also searchable via HDR-UK. 
• We have identified new molecular targets for drug development and are optimising physiological measures for diagnosis including functional brain imaging and microneurography. 
• We developed the PAINCAST podcast, led by our patient partners, giving an introduction to neuropathic pain and the PAINSTORM project. 

What happens next? 

PAINSTORM aims to produce useful tools, data and samples for future research. The team hopes this will help researchers find better ways to predict nerve pain, measure it and test treatments. The long-term goal is to improve life for people living with nerve pain. 

We are completing our studies and data analysis in collaboration with researchers from other APDP consortia. Genetic analysis will be coordinated with ADVANTAGE, we plan to share data with the Alleviate data hub and extend our psychology analysis with CRIISP. 

Meet the team

PAINSTORM is led by Professor David Bennett at the University of Oxford. The PAINSTORM team includes people with lived experience of neuropathic pain, healthcare professionals, scientists, and industry partners.  

Professor David Bennett – Professor of Neurology and Neurobiology

Professor David Bennett is Professor of Neurology and Neurobiology at the University of Oxford. He is Head of the Division of Clinical Neurology and has a clinical interest in peripheral neuropathy and pain management. 

He is also an Honorary Consultant Neurologist and administers a specialist neuropathy and channelopathy clinical service at the Oxford University Hospitals Foundation Trust. 

His research aims to better understand how the nervous system responds to injury in order to develop strategies to promote peripheral nerve repair and to prevent the development of neuropathic pain. 

His research uses a multi-disciplinary approach including electrophysiology, cell culture, preclinical transgenic models and transcriptional profiling as well as biomarker, psychophysical and genetic studies in patients. 

This research is leading to a better understanding of the events which lead to neuropathic pain, improved patient stratification and has led to new drug targets which are undergoing clinical trials. 

Professor Bennett has been involved in understanding the genetic basis of inherited painful channelopathies and in the description and validation of novel pain mediators such as NGF and CXCL5. 

He led the DOLORIsk initiative, funded by the European Union, which led to the PAINSTORM project funded through the Advanced Pain Discovery Platform.