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International Collaborative Research Network

ICRNetwork

PSC Partners International Collaborative Research Network

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.
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