Broad perspectives. Patient-centered research. Relevant answers.
The Consortium for Patient-centered Research on PFIC (CPRP) is a multi-stakeholder research consortium dedicated to developing the infrastructure for comparative effectiveness research on PFIC, with a research agenda defined by the needs and priorities of the patient community.
WHAT WE’RE DOING
Between now and December 2027, we will:
Form the team
A 14-person Steering Committee of patients, parents, clinicians, researchers, and nurses — selected through an open application process and operating as equal partners.
Build the structure
A governance charter establishing how the consortium makes decisions, with patient and family priorities at its core
Set the research agenda
A defined set of comparative effectiveness research questions, prioritized by the people who live with PFIC.
The consortium will also document the full development process in a publicly available framework, enabling other rare disease patient organizations to replicate and build on this model.
WHERE THINGS STAND
Progress Snapshot
Phase 1
Project launched — January 2026
Phase 2
Steering Committee recruited and oriented
Phase 3
Governance charterIn Progress
Phase 4
Research agendaIn Progress
Phase 5
Public development frameworkIn Progress
ABOUT OUR FUNDER
Funded by PCORI
This project was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (Contract #42398).
PCORI is the U.S.’s leading funder of patient-centered comparative clinical effectiveness research (CER).
“CER compares the benefits and potential harms of different healthcare options, generating evidence that empowers patients, caregivers and other healthcare decision makers with information to make informed choices that reflect their needs and preferences.” – PCORI Website