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Project summary

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

PAINSTORM brings together experts in and people living with neuropathic pain (NeuP). NeuP affects 8 per cent of the population and is caused by damage to the sensory nervous system that affects the way our bodies deal with impulses from our nerves, often through conditions such as diabetes, chemotherapy and HIV. It is increasingly common as we are living longer, have increasing levels of diabetes and are surviving cancer.

People living with NeuP tell us it has a major impact on their quality of life. Unfortunately, many of the treatments we currently use only work in small groups of patients. Also, while NeuP impacts many aspects of each person, most research and treatment is separate, rather than looking at causes and treatments as a whole. They are mainly concerned with treating NeuP with medications that may cause side effects, rather than looking at people as a whole alongside their social circumstances and how the way they think about NeuP affects them.

In order to deal with this situation, we need to understand what causes NeuP in people and continues to give people symptoms. PAINSTORM will use a number of different approaches but at the heart will be people working together to understand this situation in a way that hasn't been tried before. Our focus will be on studying people at risk of NeuP and following their progress over time. We will use a number of registers of people living with NeuP, as well as recruiting new participants. Our aim is to understand what outcomes are important to all people living with NeuP, regardless of the cause.

A key question is understanding why some people are severely impacted by NeuP while others with a similar pattern of nerve damage are not. Hence, we will identify factors such as age, gender and ethnicity, our environment, our living situation and what disease people have, which all determine NeuP risk. We will look to see if there are any genetic risk factors for NeuP.

Tissue samples taken from patients will be used to look at molecular pathways contributing to chronic NeuP and help develop markers that may show up in blood. These samples will be stored and made available to other researchers via a biobank. We will improve ways to assess NeuP, including sensory profiling, remote monitoring via activity tracker type devices, 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 join together these multi-dimensional datasets to understand the interaction between what may cause NeuP and what may protect us from developing it. We will develop biomarkers, substances found in the blood and tissues, as a means to measure pain and how it changes over time, which can be applied to how people are treated and drug trials. We aim to improve targeting of existing treatments, as well as identifying and prioritising new treatment targets.

We will talk to key stakeholder groups including health professionals, people living with NeuP and industry at the outset and throughout PAINSTORM. Results will be widely shared d through development of accessible databases, plain language 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 ensuring that everyone works together to manage NeuP.

PAINSTORM is a collaboration between academia (University of Oxford, Imperial College London, University of Dundee, University of Aberdeen, Ghent University, King's College London), industry (Eli Lilly, AstraZeneca), and Patient Partners (Lynn Laidlaw, Fiona Talkington, Jo Josh, and Gordon Liddle).

What is the Advance Pain Discovery Platform?

The PAINSTORM project is part of the Advanced Pain Discovery Platform (APDP).

The Advanced Pain Discovery Platform (APDP) is a five-year project with a mix of funding from the UK Government research funders MRC, ESRC, BBSRC, Versus Arthritis and a Pharmaceutical company, Eli Lilly.

People living with pain conditions told us that there were many treatment challenges which stood in the way of improving their lives, to do this we need a better understanding of why some people have pain conditions. Our hope is to identify better ways to help understand and treat pain.

The APDP has many different projects. Health care staff, researchers, people living with pain, charity representatives and people working in industry have joined to work together.

Neuropathic Pain

Pain is an unpleasant sensory and emotional experience that can have a significant impact on a person's quality of life, general health, psychological health, and social and economic wellbeing (NICE, 2017).

Neuropathic pain is a type of persistent (or chronic) pain caused by problems with the nervous system. This is the part of your body that helps you feel touch, pressure, pain, temperature, position, movement, and vibration. This can be in your muscles, joints, skin, and the layers of tissue just beneath your skin (fascia).

What Causes Neuropathic Pain?

Neuropathic pain can be due to problems with your central nervous system (your brain and spinal cord) or your peripheral nervous system (wider nervous system outside of the brain and spinal cord). Sensors send signals from the skin and body tissues to the spinal cord and brain, where they are registered as pain.

Sometimes, pain can occur on its own (without an obvious 'trigger'). Other times, it may be caused by cold, heat, gentle pressure on the skin, or other stimuli that are not usually painful. People with neuropathic pain often have difficulty sleeping. This can lead to fatigue, and for some people, depression.

How Is Neuropathic Pain Treated?

Neuropathic pain can be difficult to manage, because it has a wide range of causes. These can include previous illnesses, existing conditions, surgery, or acquired injury. The pain can come in short bursts, or it can be there all the time. It can feel like shooting, stabbing, like an electric shock, burning, tingling, tightness, numbness, prickling, itching, or a sensation of pins and needles.

We are not sure how many people suffer from this sort of pain. Estimates suggest around seven people in every 100 may experience these symptoms.

The information above on Neuropathic Pain has come directly from this website, last accessed on 25 October 2021.