Project IMPACT: Participate

We need PFIC community members (like you!) to share input and prepare to become active partners in research. 

You can receive email announcements for upcoming IMPACT activities by joining the PFIC Network Mailing List!

Upcoming Activities

June Focus Group-Register Now!

Join our community of patients, parents, clinicians, and researchers on Zoom for a conversation about research! 

Find out more and register!

IMPACT: TEA is now live!

The PFIC IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC families and clinicians to provide information about PFIC treatments and patients’ experiences with them. 

It includes a survey to help us gather more info about patients’ experiences so that we can start to design research studies that are directly relevant to the PFIC community! 


Ongoing Activities

IMPACT Module 1 – “What is Patient-Centered Outcomes Research (PCOR)?”

IMPACT Module 2 – “How can I contribute to patient-centered outcomes research (PCOR)?”

IMPACT Module 3–  “How can we develop research questions that lead to answers that matter to patients and families?”

Who Can Participate

  • PFIC patients
  • Parents, caregivers, legal guardians, or other family members of PFIC patients
  • Individuals involved in PFIC healthcare (MDs, nurse, or nurse practitioners)
  • PFIC researchers

Adolescents (14-18 years) diagnosed with PFIC or related diseases are greatly encouraged to participate. Adolescents will be required to provide their assent and parental consent prior to accessing the modules and focus groups.

Ways to Participate

Learning Modules and Feedback Surveys

Over the next two years, we will release (six) online learning modules with accompanying surveys. These modules will provide education about patient-centered outcomes research for patients AND clinicians. Each module + survey will take roughly 25 minutes, and can be completed from anywhere at any time from your phone or computer!

Focus Group Meetings

Starting in August 2023, there will be Focus Group meetings every other month to discuss the module content and module survey results. These meetings will allow us to take a deeper dive into patient-centered outcomes research together!

In the first year of the project, Focus Group participants will also provide input for building the interactive web app.

Interactive Web App (Now Live!)

The PFIC IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC families and clinicians to provide information about PFIC treatments and patients’ experiences with them. It includes a survey to help us gather more info about patients’ experiences so that we can start to design research studies that are directly relevant to the PFIC community! You can check out the IMPACT:TEA & contribute to the survey here.

Contact Info

Contact us! Email info@pfic.org to get more information about how you can participate in IMPACT activities.