The PAINSTORM project aims to understand, better assess, and ultimately treat neuropathic pain. To do this, we are recruiting people living with neuropathic pain or at risk of developing neuropathic pain. The way we recruit participants - the questionnaires we use and the data we collect - needs to be the same across all centres: this research theme makes sure that the protocols are harmonised.
We are recruiting participants using questionnaires which we send to participants, or in some cases which are available in large national datasets, such as UK Biobank. Additionally, in three PAINSTORM centres (the University of Dundee, the University of Oxford, and Imperial College London), participants have more detailed assessment, which is called "deep phenotyping". Where possible, we will follow participants over time to see if their symptoms change. We are including a number of conditions that increase the risk of neuropathic pain, including nerve damage (peripheral neuropathy) due to diabetes, HIV infection and chemotherapy treatment.
We aim to be consistent in the way that we assess neuropathic pain, using some measures and questionnaires which are common to all participants as well as some that are designed to be used in specific conditions. We are working with our patient partners and charities to try and ensure participants of diverse backgrounds and ethnicities are represented in PAINSTORM, and that our approaches to assessing neuropathic pain are meaningful for those living with it. We harmonised our phenotyping methods and are now recruiting across a range of neuropathic pain disorders, such as:
- Diabetic neuropathy
- Chemotherapy-induced neuropathy
- HIV-induced neuropathy
- Rare or extreme pain disorders, for instance genetically inherited conditions
- Peripheral neuropathy from unknown origin
We will also collaborate with other projects to widen our reach, for instance with the FORECAST study investigating longitudinal outcomes in sciatica.
To decide whether a participant has neuropathic pain or not, we use the Neuropathic Pain Special Interest Group grading algorithm of neuropathic pain. Our questionnaires also include validated screening tools for neuropathic pain.