Evaluating Chronic Pain in ADPKD using a Patient-Centred Approach to Data Collection and Synthesis: A National Prospective Observational Study
Following the success with DRINK, PKD Charity submitted a second proposal to the PLRH, focusing on chronic pain interventions in autosomal dominant polycystic kidney disease (ADPKD). Chronic pain affects 60% of ADPKD patients and can severely impact quality of life. This is a high priority for patients but unlikely to receive industry funding. The PLRH, PKD Charity, 8 patients and international nephrologists held a workshop in May 2017 to explore the topic and consider feasible trial designs.
In March 2019 we applied to a Research for Patient Benefit NIHR ‘chronic pain’ funding call to conduct an observational study and refine our pain assessment tool. We have been invited to apply to the second stage of this call, and look forward to the funding decision in December.