PFIC Network Project IMPACT Updates
2024 PFIC Family & Scientific Conference Session
Last year PFIC Network received a Eugene Washington Engagement Award from the Patient Centered Outcomes Research Institute (PCORI) (PCORI grant EASO-30450). Our project is titled “IMPACT” (Identifying research targets by Merging Patient And Clinician Treatment information). It aims at preparing the PFIC community to participate as equal partners in patient-centered research studies that focus on PFIC treatments.
During this presentation, IMPACT Project Team members will talk about the progress-to-date. One of the most important milestones is the IMPACT Treatment Experience App which launches at the conference. The webapp is an interactive platform that lets patients enter their experiences with the different PFIC treatments and medications, and that provides summarized treatment information.
Interested in the patient-researcher roundtable discussion that followed this presentation? Check out the discussion summary!
This presentation was recorded at the 2024 PFIC Family & Scientific Conference hosted in partnership with Cincinnati Childrens Hospital. Find out more about PFIC Network Conferences!