Early Results from PSC and Cholangiocarcinoma (CCA) Survey Presented at European Meeting

The Precision BTC Network, a European-focused international coalition to improve care of biliary tract cancer (also referred to as CCA or BTC), held a meeting in Mallorca in May 2025 focused on biomarker development for CCA diagnosis and management. At the meeting, Stephen Rossi, chief scientific officer at PSC Partners, presented preliminary results from the PSC and Cholangiocarcinoma (CCA) Patient Survey, which was available in the Registry from March 26 to May 16, 2025.

With 624 responses in just seven weeks, it is abundantly clear that this topic is of high importance to the community. Many thanks to all survey respondents, both through the Registry and through PSC Support (UK), who co-developed this survey with PSC Partners. Your voice is moving mountains!

The survey revealed large variability in current practices of monitoring for CCA in patients with PSC, who are at significantly higher risk for developing CCA than the general population. While differences in regional guidelines between North America and Europe lead to differences in care, the survey highlighted both the importance of discussing CCA proactively with one’s doctor and a strong desire from the community for improved education regarding CCA.

Thanks in part to community input, PSC Partners' International Collaborative Research Network has funded a study to advance early detection methods for CCA. The ultimate goal of this project is to bring new tools into the hands of doctors and patients. Understanding current practices in CCA surveillance is important to understand how prospective new tools can be integrated into patient care. Results from the survey will be made publicly available later this year.