Official Project IMPACT activities wrapped up in July 2025 with the completion of our PFIC Research Roadmap.
However, there are several resources and participation opportunities developed as part of this project that are ongoing:
Ongoing Activities
PFIC Treatment Experience App (TEA)
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!
Learning Modules
The IMPACT learning modules provide education about patient-centered outcomes research for patients AND clinicians. Each module + survey takes around 25 minutes and can be completed from anywhere at any time from your phone or computer!
IMPACT Module 1 – “What is Patient-Centered Outcomes Research (PCOR)?” Take Module 1 Now!
IMPACT Module 2 – “How can I contribute to patient-centered outcomes research (PCOR)?” Take Module 2 Now!
IMPACT Module 3– “How can we develop research questions that lead to answers that matter to patients and families?” Take Module 3 Now!
IMPACT Module 4– Take a virtual tour of the IMPACT: Treatment Experience App and give your feedback! Take Module 4 Now!
IMPACT Module 5– Complete a brief 15 minute survey to help us make sure our PFIC Research Roadmap is as comprehensive as possible! Take Module 5 Now!
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.