How PSC Partners Supports  BIOMAP‑PSC through the International Collaborative Research Network (ICRN)

Patient‑Identified Need

Across multiple engagement efforts, PSC Partners heard a consistent message from the community: earlier and more reliable detection of PSC‑CCA is a top priority. Patients emphasized the need for tools that reduce uncertainty, improve monitoring, and support timely intervention.

The Role of the ICRN
To act on patient-driven priorities, PSC Partners created the International Collaborative Research Network (ICRN) in 2022. The ICRN brings together patients, caregivers, clinicians, and researchers to collaboratively shape and advance research that reflects the lived experience of PSC.

At the 2024 ICRN convening, participants worked together to identify the most urgent research needs, refine project concepts, and develop proposals grounded in community‑generated priorities. PSC Partners committed $200,000 USD to fund the top project emerging from this process. The project selected through this combined community‑input and scientific‑review process was BIOMAP‑PSC.

BIOMAP‑PSC Overview

BIOMAP‑PSC is a large, international, prospective study led by Jesús Banales, PhD, and Pedro Rodrigues, PhD, at the Biodonostia Health Research Institute in Spain. Through the ICRN process, PSC Partners is providing significant support to help move the project forward.

As the inaugural ICRN Award project, “BIOMAP‑PSC: Prospective validation of candidate blood biomarkers for PSC‑CCA and roadmap for clinical implementation” aims to advance earlier and more accurate detection of cholangiocarcinoma (CCA) in people with PSC. The study’s purpose is to validate blood‑based biomarkers for earlier PSC‑CCA detection and ultimately create a clinically implementable diagnostic pathway.

Why This Project Was Selected

BIOMAP‑PSC rose to the top through a two‑stage process that combined global community input with scientific review. A survey of 235 participants across 17 countries and 35 U.S. states identified PSC‑CCA early detection as the highest‑priority research area. Strong scientific feasibility and existing biomarker datasets further supported the selection of this project.

Why This Project Matters

PSC‑CCA is still frequently diagnosed at advanced stages, even with routine MRI/MRCP and serum marker testing. Current tools often cannot distinguish benign inflammatory strictures from early malignancy, leaving patients and clinicians without reliable early‑detection options.
BIOMAP‑PSC aims to address these gaps by enabling:

  • earlier detection
  • improved eligibility for curative therapies
  • risk‑stratified surveillance
  • better long‑term outcomes

Study Design & Methods

The study draws on blood samples from a large, diverse international PSC cohort, including both adult and pediatric participants. Samples come from multiple registries and biobanks and are linked to longitudinal clinical outcomes.

Researchers will evaluate molecular signatures associated with early malignant transformation, including:

  • metabolomic profiles
  • proteomic markers
  • circulating biomarker patterns

Study Goals & Expected Impact

BIOMAP‑PSC is designed to identify minimally invasive blood‑based biomarkers that can detect CCA earlier and more accurately. The study aims to distinguish benign from malignant biliary strictures, detect high‑risk patients before clinical or imaging progression, and validate biomarkers across populations for reproducibility and clinical utility.

The ultimate goal is to develop a roadmap for integrating these biomarkers into routine PSC care—offering patients more predictable monitoring and reducing the uncertainty that currently surrounds PSC‑CCA detection.