Science & Research

PFIC Network is committed to improving treatment options, slowing disease progression, and ultimately finding a cure for PFIC related diseases. We support a variety of scientific and research initiatives related to PFIC. From funding research directly to collecting data in our patient registry to bringing together the research and patient communities at our annual conference, we are always itching for a cure.

PFIC Network Patient Registry

The PFIC Network Patient Registry collects patient-reported outcomes about diagnosis, symptoms, treatments, itch, sleep, general health, and family quality of life. Learn more about how you can help to emphasize the patient experience in research.
PFIC Network Grant Program

PFIC Network provides funding opportunities for PFIC research that leads to improvements in the lives of PFIC patients and their caretakers. Learn more about research that we have funded and view current funding opportunities.

 
Project IMPACT

IMPACT is a PFIC Network-led project funded by a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award. The goal of the project is to prepare the PFIC community for patient-centered outcomes research (PCOR) by July 2025.
PFIC Family & Scientific Conference

We aim to bring together patients & families, clinicians, researchers and industry in order to share scientific knowledge, share patient experiences, and identify ways that we can collectively improve the lives of patients and families affected by PFIC worldwide. Learn more about the conference here.
External Research Projects

PFIC Network provides information about external planned and ongoing PFIC research. View current and ongoing trials and studies.
PFIC Research Library

Read lay summaries of scientific articles related to progressive familial intrahepatic cholestasis (PFIC).

 

 

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