What is PAINSTORM?
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. Neuropathic pain 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 neuropathic pain 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 neuropathic pain 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 neuropathic pain 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 neuropathic pain affects them.
In order to deal with this situation, we need to understand what causes neuropathic pain 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 neuropathic pain and following their progress over time. We will use a number of registers of people living with neuropathic pain, as well as recruiting new participants. Our aim is to understand what outcomes are important to all people living with neuropathic pain, regardless of the cause.
How are we studying neuropathic pain?
A key question is understanding why some people are severely impacted by neuropathic pain 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 neuropathic pain risk. We will look to see if there are any genetic risk factors for neuropathic pain.
Tissue samples taken from patients will be used to look at molecular pathways contributing to chronic neuropathic pain 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 neuropathic pain, 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 neuropathic pain. We will join together these multi-dimensional datasets to understand the interaction between what may cause neuropathic pain 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 neuropathic pain and industry at the outset and throughout PAINSTORM. Results will be widely shared 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 neuropathic pain.
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 (Jo Josh, Gordon Liddle, and Fiona Talkington).