Patient & Public Involvement - CRPS

Patients and researchers have come together 11 times so far, with our last meeting held in April 2023. Meetings are loosely structured and involve brief presentations from researchers on proposed studies as well as open-ended discussions. 

Patients are Patients are invited to discuss their experience living with CRPS - how it affects them physically, mentally, and socially - and what kind of research they would like to see in the future regarding CRPS. Friends and family of patients are often invited to discuss how the condition has affected their loved one, and what they think research needs to address. 

These meetings help researchers better understand a patient's experience of living with fibromyalgia, which promotes better research and improves patients experience when taking part in research. 

Two publications have been produced from some of our CRPS PPI days -

1.  Exploring the impact of pain management programme attendance on complex regional pain syndrome (CRPS) patients' decision making regarding immunosuppressant treatment to manage their chronic pain condition (2020) - Click here to read more

2. Patient consultation about a trial of therapeutic plasma exchange for complex regional pain syndrome (2018) - Click here to read more