PSC Partners Announces Project Selection for 2025 ICRN Award
PSC Partners Seeking a Cure Announces First ICRN-Funded Project to Advance Early Detection of Bile Duct Cancer in PSC Patients
Project is Co-Led and Fully Funded by the PSC Patient Community
Greenwood Village, CO – June 24, 2025 — PSC Partners Seeking a Cure is proud to announce the first project funded and coordinated through its International Collaborative Research Network (ICRN), a global initiative created to unite patients and experts in driving research to identify treatments and cures for primary sclerosing cholangitis (PSC) and closely associated diseases. The selected study, Prospective validation of candidate blood biomarkers for PSC-CCA and development of a roadmap for their clinical implementation (BIOMAP-PSC), will build on promising early data to validate a blood test that may allow for earlier, less invasive, and more accurate detection of bile duct cancer in people living with PSC. The project is being coordinated by Pedro Rodrigues, PhD and Jesus Banales, PhD at the Biodonostia Health Research Institute in Spain, in collaboration with PSC Partners and the ICRN Working Group.
The Funded Project: Biomarkers for Detecting Cholangiocarcinoma (CCA)
The rare bile duct cancer cholangiocarcinoma (CCA) is one of the most feared complications and a leading cause of death for people with PSC. People with PSC have a higher risk of developing bile duct cancer, but currently, it’s usually found too late. Doctors need better tools to figure out which patients are at higher risk so they can catch the cancer sooner. They also need a way to tell the difference between a benign versus a malignant bile duct blockage so they can make better treatment decisions and, ultimately, determine eligibility for potential curative treatments.
This newly funded study aims to improve early detection of CCA in people with PSC using relatively non-invasive blood tests. To confirm early promising results by running the test on a large and diverse group of PSC blood samples, researchers will study blood samples from PSC patients around the world — including children and adults. This project will combine data from multiple ongoing PSC registries/biobanks and will develop standardized protocols to ensure broad applicability for future testing.
Finding these blood test cancer markers could help doctors identify high-risk patients earlier, leading to quicker treatment and better outcomes. In the future, this could mean more personalized screening plans, helping each patient get the right level of monitoring based on their individual risk of CCA.
A New Kind of Research Selection
To determine which project would receive the inaugural ICRN grant of $200,000 over two years, PSC Partners conducted a two-stage review process:
1. Community Priority Survey – A survey collected feedback from 235 participants across 15 countries and 35 states in the USA. The majority of respondents (64%) were patients with PSC. Other respondents included relatives (31%) and caregivers (5%) of patients with PSC. Respondents ranked each proposed project by importance and provided detailed comments on what mattered most to them.
2. Independent Scientific Review – Top-ranked projects were then reviewed by independent scientific experts for feasibility, innovation, and likelihood of impact. These evaluations, alongside PSC Partners' strategic research goals, informed the final funding decision.
Despite fewer than 2% of survey respondents having experienced CCA personally, the project focused on prospective validation of BIOMAP-CCA and was ranked was ranked as the top priority by the largest number of community survey participants. This underscores the community’s deep concern over the disease’s severity and the urgent need for better detection methods.
This particular proposal was also commended during the scientific reviews for its scientific merit and likelihood for success. The project builds on existing blood metabolomic biomarker data, allowing for efficient progress toward a clinically relevant screening tool for PSC patients.
A Model for Future Research
“This project is a major milestone in PSC research - not just because of what it aims to accomplish scientifically and clinically, but because it represents what’s possible when patients are true partners in research,” said PSC Partners’ Chief Scientific Officer Stephen Rossi, PharmD.
The ICRN operates on a biennial cycle, with the next in-person convening scheduled for 2026. In the interim, PSC Partners will focus on supporting this first project, sharing progress updates with the community, and continuing to build momentum toward our mission to drive research to identify treatments and a cure for PSC, while providing education and support for those impacted by this rare disease.
To learn more about PSC Partners International Collaborative Research Network, visit International Collaborative Research Network (ICRN) | Advancing PSC Research.
Direct research or media inquiries to stephen@pscpartners.org.
