Project IMPACT: Participate

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

Upcoming Activities

Module 2 is now live!

The title of Module 2 is “How can I contribute to patient-centered outcomes research (PCOR)?”.

It will cover topics such as: 

  • What participating in PCOR can look like for you
  • Why your participation is important
  • The steps of a research project and how you can get involved!

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

Ongoing Activities

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

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

Coming July 2024!

The app will display clinical information about different PFIC treatments. It will also solicit patient experiences with the listed treatments for the purpose of identifying questions for future patient-centered outcomes research studies.

Contact Info

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