Additional Resources

Adult and kid engaging

Researcher Companion Materials

This companion provides an overview of the work accomplished during IMPACT and can serve as a practical manual for researchers at the early stages of planning a patient-centered CER study in PFIC.

 It includes worksheets, checklists, and planning tools to help:

  • build and sustain engagement with PFIC patients, parents, and other stakeholders at every stage – from planning a study to the dissemination of study results.
  • design a PFIC CER study around patient-defined priorities.

We hope you find it useful – and we appreciate your interest in including the voices of those living with PFIC in your research!

IMPACT Treatment Experience App

The PFIC IMPACT Treatment Experience App (IMPACT:TEA) was designed by PFIC patients, families clinicians, and researchers to

  • provide information about PFIC treatments and patients’ experiences with them
  • learn which treatment outcomes matter most so that we can start to design research studies that are directly relevant to the PFIC community

It’s a living resource, updated with summaries of patient responses to the in-app survey.

After exploring, please consider adding your own experience to help strengthen this resource and support future patient-centered research!

IMPACT Education Modules

The IMPACT modules offer self-paced education about patient-centered comparative effectiveness research (CER) and are designed for both patients and clinicians. Each module takes about 25 minutes to complete and can be accessed anytime, anywhere from your phone or computer.

Access the modules below:

Module 1

What is Patient-Centered Outcomes Research (PCOR)?

Module 2

How can I contribute to patient-centered outcomes research (PCOR)?

Module 3

How can we develop research questions that lead to answers that matter to patients and families?

Module 4

Virtual Tour of the Treatment Experience App (TEA)

Module 5

Review of Draft PFIC Patient-Centered CER Targets

Module 6

Multi-Stakeholder Research Teams

Note: While four of the six IMPACT modules focused on education and capacity building, two were specifically designed to gather stakeholder input – one on the design of the Treatment Experience App (TEA), and another on the draft list of PFIC CER targets.

What’s Next