International Collaborative
Research Network (ICRN)
Connecting global PSC experts and the patient community to shape research ideas, develop proposals, and advance projects driven by shared priorities. The second ICRN gathering took place in Phoenix, AZ, on October 17-18, 2024. The event was co-chaired by Yury Popov, MD, PhD and Bettina Hansen, PhD.
About the ICRN
PSC Partners launched the ICRN in 2022 to unite patients, caregivers, and international experts around one table to accelerate research on PSC and closely associated diseases. The model blends community members’ lived experience with scientific rigor to drive research on what matters most to the community.
How Patient Input Shaped ICRN:
- Identified Patient Needs: PSC Partners collected patient perspectives on unmet/unaddressed research and treatment needs from those living with PSC through the Patient-Focused Drug Development Forum (PFDD), Our Voices Survey, and the ROADMAP (research education) webinar series.
- Community Engagement: PSC Partners collaborated with the PSC community to establish research priorities at the 2022 PSC Partners Annual Conference
- Scientific Engagement: PSC Partners analyzed scientific literature and consulted with international experts via interviews and the 2022 virtual ICRN thinktanks
- Draft Research Agenda: PSC Partners formulated a research agenda with priority areas based on patient community and research experts’ questions
Patients are not merely participants, they are essential partners in translating discoveries from the laboratory to real-world clinical solutions. None of these advancements would be possible without the generosity and active participation of patients and their families.
Dr. Jesús Bañales
From Inception to impact: Engagement Metrics
Attendees at the convening
Community members engaged in proposal prioritization
Awarded to the first ICRN-funded, patient-partnered project
Working Group Topics, Co-Chairs, and Project Proposals
Six Working Groups, each with co-chairs representing the patient community and clinical or academic research, developed innovative research project proposals:
Inflammation and Fibrosis Working Group
– Co-chairs: Jesse Kirkpatrick, PhD and Yury Popov, MD, PhD
– Proposal: Genetic Drivers of Inflammation and Fibrosis
Gut Microbiome
Working Group
– Co-chairs: Mahesh Krishna, MD and Michael Trauner, MD
– Proposal: Dietary Impact on Quality of Life, Clinical Outcomes, and Gut Microbiome
Diagnosis, Prognosis, and Clinical Management Working Group
– Co-chairs: Marco Carbone, MD, PhD and Christine Lam, PhD
– Proposal: Radiologic Assessment of Disease Progression
Clinical Trials and Endpoints Working Group
– Co-chairs: Bettina Hansen, PhD and Stephen Rossi, PharmD
– Project: Patient-Reported Outcome Use in Clinical Trials for PSC
Managing Transplants and Recurrent PSC Working Group
– Co-chairs: Lisa Forman, MD and Fred Sabernick, MSEE
– Project: Post-Transplant PSC – Characterizing Practice Variations, Studying Clinical Outcomes, and Investigating Biomarkers of PSC Recurrence
CCA Screening, Surveillance, and Treatment Working Group
– Co-chairs: Jesús Bañales, PhD and Matt McMurtry, MD
– Project: Biomarkers for Detecting Cholangiocarcinoma (CCA)
Patient Partnership Spotlight: The 2025 ICRN Award
Award Details: PSC Partners committed $200,000 over two years to launch a research proposal resulting from the 2025 ICRN Scientific Convening. The project selection process continued ICRN’s model of co-engaging patient community members and expert researchers.
Community Priority Survey
235 community members from 17 countries provided feedback & ranked proposals. Although <2% of patient respondents reported a cholangiocarcinoma diagnosis, the CCA biomarker project received the highest community priority score.
Community participant types:
64% patients, 24% parents, 9% other relatives; the remainder caregivers and friends.
Independent Scientific Review
External experts (not Working Group participants) assessed feasibility, innovation, and potential for near-term impact. The CCA biomarker project was ranked as the top scientific priority, citing strong preliminary data, impressive study design with international networks in place, and immense clinical relevance.
Working Group Topics, Co-Chairs, and Project Proposals
Project Selected for the Inaugural ICRN Award:
– The project selected for the inaugural ICRN Award is called “BIOMAP-PSC: Prospective validation of candidate blood biomarkers for PSC-CCA and roadmap for clinical implementation.”
– BIOMAP-PSC is coordinated by Pedro Rodrigues, PhD and Jesus Banales, PhD at Biodonostia Health Research Institute in Spain, and in continued partnership with PSC Partners and the associated ICRN CCA Working Group.
– It aims to validate a relatively non-invasive blood test that could enable earlier, more accurate detection of CCA in people with PSC. It harmonizes protocols across an international network, utilizing diverse, multi-center PSC samples (pediatric and adult).
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