A better understanding of bile duct infections, often called ‘PSC flares’ or ‘cholangitis attacks’, is essential for developing new treatments for primary sclerosing cholangitis (PSC). Currently, there is a significant lack of data regarding the symptoms patients experience before, during, and after these episodes.

What is the purpose of the acute cholangitis survey?

The goal of this research is to capture the lived experience of PSC flares to help doctors and researchers identify patterns that could lead to better clinical care and new therapeutic options. This project was developed by PSC Support and PSC Partners as part of the PSC Forum Acute Cholangitis Working Group and has been endorsed and translated by the ERN RARE-LIVER PSC Working Group.

Who can participate in the survey?

• Patients only: The survey must be completed by individuals living with PSC, not caregivers.
• Experience of flares: You should participate if you have had what you consider a flare or attack, regardless of whether the symptoms were mild or severe.
• Anonymity: Please do not provide any identifying personal information or details about your specific PSC doctor.

The survey is available in 11 languages and takes approximately 15 minutes to complete. Your contribution helps ensure the patient voice remains at the centre of research and care improvements.