The Cholangiocarcinoma Patient Survey is a joint effort by PSC Partners and PSC Support (UK) to assess PSC patient awareness and communication gaps around cholangiocarcinoma (CCA), a rare bile duct cancer associated with PSC.
Patients with PSC face an increased risk of developing CCA, making early detection and improved understanding crucial—especially as new screening tests are developed.
Over 600 adult PSC patients participated in the survey, offering wide-ranging insight into current knowledge and unmet informational needs.
Results reveal significant gaps in both patient and provider education regarding CCA risk and surveillance, alongside a strong demand for accurate and timely detection methods.
Findings point to the need for tailored communication and educational strategies to be implemented ahead of any future CCA screening rollout within the PSC community.
Results from this survey were presented at the Precision BTC Network meeting in Mallorca in May, and the aim is to present the study data to a broader audience at upcoming major medical conferences.
Posted July 2025
