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On January 1, 2026, PFIC Network launched a two-year PCORI-funded project to establish a consortium for patient-centered comparative effectiveness research (CER) on PFIC (EACB #42398).

The first major milestone was forming the Consortium Steering Committee (SC). During the project, the SC will develop the consortium’s governance charter and set its research agenda. Post-project, the SC will continue to guide the research activities of the consortium.

 From 24 applicants, the project team selected 14 members through a structured review process: 2 people living with PFIC, 4 parents, 6 clinician/researchers from different institutions, and 2 nursing professionals.

In March, the Project Team (PT) held two separate virtual orientations for patients/parents and clinicians/researchers/nursing professionals to introduce the SC’s goals. At the same time the PT gathered input on how members wanted to communicate and make decisions together. On April 29, all 14 members met as a full committee and reached consensus on the Principles for SC Collaboration and approved the document.

SC members completed six learning modules that covered the foundations of patient-centered CER, and what it means for patients and families to participate as equal partners in the research process

The Steering Committee will meet six times between July and December 2026 to draft the consortium’s governance charter — the document that will define the CPRP’s structure, decision-making processes, and operating procedures, with PFIC patient and family priorities embedded throughout. The first meeting will take place in-person at the  2026 PFIC Family & Scientific Conference (Chicago, July 9–10), which also includes an activity where patients and parents will share their perspectives on participating in research studies. Findings from the activity will inform the consortium’s research agenda in 2027. Stay tuned for updates.

In 2027, the Steering Committee will meet monthly to develop the consortium’s research agenda. 

• A January workshop will kick off the process, using the PICOTS framework1 (populations, interventions, comparators, outcomes, timing, and settings) to transform  treatment questions generated in PFIC Network’s previous PCORI-funded project, IMPACT, into comparative effectiveness research questions
• Subsequent meetings will focus on prioritizing them by relevance, feasibility, and community benefit. 
• A public “town hall” in October will solicit feedback from patients, parents, clinicians, and researchers on the draft agenda before it is finalized in December.

¹ Patient-Centered Outcomes Research Institute. (n.d.). PCORI methodology standards: Formulating research questions. https://www.pcori.org/research-related-projects/about-our-research/research-methodology/pcori-methodology-standards#Formulating%20Research%20Questions