ICRNetwork

Key Steps Taken by PSC Partners to Build the ICRN:

• Identified Patient Needs: Collected patient perspectives and priorities from those living with PSC through the Patient-Focused Drug Development Forum (PFDD), Our Voices Survey, and the ROADMAP webinar series.
• Community Engagement: Collaborated with the PSC community to establish research priorities at the 2022 PSC Partners Annual Conference
• Scientific Review: Analyzed scientific literature and consulted with international experts
• Draft Research Agenda: Formulated a research agenda based on patient questions

Research Agenda Focus Areas:

1. The cause of PSC
2. Factors that lead to PSC progression
3. Effective diagnosis and monitoring of PSC, including biomarkers
4. Drug development
5. Transplantation outcomes
6. Prevention and early detection of cholangiocarcinoma

2024 ICRN Convening: 

The second ICRN gathering occurred in Phoenix, AZ, on October 17-18, 2024. This event brought together diverse voices and expertise from around the world. Over two days, participants engaged in collaborative discussions, refined research questions, and laid the groundwork for patient-centered initiatives to improve care and accelerate the development of treatments.

Goals of the Meeting:

• Collaborate: Forge new connections and enhance existing ones across areas of expertise for PSC and related diseases: PSC-IBD (Inflammatory Bowel Disease) and PSC-CCA (Cholangiocarcinoma).
• Create: Generate lists of potential research projects and high-priority proposals, seek input from the patient community, pursue funding, and drive research forward.
• Strategize: Identify research questions, models, or tools to enable or accelerate the development of novel therapies for PSC, refining the research strategy to reflect cutting-edge science and ICRN priorities.

Event co-chairs:

Yury Popov, MD, PhD

Bettina Hansen, PhD 

Working Groups:

Six Working Groups, each with co-chairs representing the patient community and clinical or academic research, focused on:

1. Pathophysiology of PSC: Inflammation and Fibrosis
2. Pathophysiology of PSC: Gut Microbiome
3. Diagnosis, Prognosis, and Clinical Management
4. Clinical Trials and Endpoints
5. Managing Transplants and Recurrent PSC
6. CCA Screening, Surveillance, and Treatment

Activities and Output:

• Day 1: Each Working Group held a 2-hour brainstorming session, resulting in:
  • Lists of potential priority research questions
  • Lists of potential research projects
  • Proposal topics selected for prioritization on Day 2
• Day 2: Each Working Group had a 90-minute proposal development session, resulting in:
  • Executive Summaries
  • Details of what, why, how, and who
  • Considerations for patient partnerships and pediatrics

Commitment: 

PSC Partners has committed $200,000 USD to fund one ICRN project, with funding distributed over two years starting in 2025. Additional funding may be secured through crowdfunding if needed.

Proposal Selection Process:

• Community survey to evaluate potential rankings and determine willingness to donate or engage in crowdfunding
• PSC Partners’ leadership will evaluate projects based on alignment with the research strategy and other initiatives.

This initiative represents a significant step towards transforming the future of PSC research through innovation, partnership, and patient-centered action.

Ways to Get Involved:

These are the ways community members can actively contribute and stay engaged with the ICRN initiative:

• You can provide financial contributions or assist with crowdfunding efforts.
• Stay tuned for future opportunities, including reviewing upcoming projects, serving on advisory committees, recruiting participants, and attending convenings.