New PFIC Network PCORI Engagement Award

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.