Results of IMPACT Published in Peer-Reviewed Journal

We are excited to announce the publication of “Identifying patient-centered outcomes in progressive familial intrahepatic cholestasis: Results from IMPACT” in the Journal of Pediatric Gastroenterology and Nutrition.

IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information) was a two-year project (2023-2025) funded through the Eugene Washington PCORI Engagement Award (EASO-30455) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The project brought together PFIC patients, family members, clinicians, and researchers to build shared knowledge and tools for patient-centered comparative effectiveness research,  a research approach designed to answer the questions that matter most to patients and families living with a condition.

The publication of these results marks an important milestone and a launching point. Building on the foundation IMPACT established, PFIC Network has received a new PCORI Engagement Award (January 2026–December 2027) to form a research consortium to plan future patient-centered comparative effectiveness research studies in PFIC.

Thank you to everyone involved—for your time, your trust, and your partnership in shaping the future of research in PFIC.

Congratulations to the Mirum Pharmaceuticals team! Yesterday they received FDA approval for LIVMARLI as a treatment for cholestatic pruritus associated with PFIC. We are so excited for PFIC patients in the US to have another tool in their toolbox to fight back against the terrible itch of pruritus. A big thank you to the Mirum team for their hard work & vision and to all the clinical trial participants who made this day possible!

View Mirum’s press release!

This July, PFIC Network was honored to receive a Global Genes Health Equity in RARE Patient Impact grant to address challenges affecting underserved patient communities. 

The PFIC Scientific Conference Held Many Great Presentations and Roundtables That Informed Both The Scientific And Patient Communities.

Thanks to Our Amazing Community, the PFIC Network Has Been Able to Follow Through with Scientific and Research Priorities to Start the PFIC Network Research Grant Program by the End of the Year.

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