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.

In our recent project, IMPACT, people living with PFIC, parents, doctors, and researchers learned together what patient-centered research means. We focused on how research can better address everyday challenges of life with PFIC. During this project, which was funded through the Eugene Washington PCORI Engagement Award program, an initiative of the Patient-Centered Outcomes Research Institute® (PCORI®), our community also shared the questions they would want research to address.

Now, we’re ready for the next step. We’re excited to share that PFIC Network has received funding for a new Engagement Award project.

Our new project, “Building Capacity to Engage in Patient-Centered CER on Progressive Familial Intrahepatic Cholestasis (PFIC),” will run from January 2026 to December 31, 2027.

Together, we will decide which research questions are most important to study first. These will become our PFIC research priorities.

We will also build a PFIC research group made up of people living with PFIC, parents, doctors, and research centers. This group – a patient-centered research consortium – will work together to plan future studies that follow these priorities. Community members like you will help guide the work every step of the way. We’re excited to share more soon and invite you to get involved as this project begins.

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. 

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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