Resources

Documents from the consortium’s work — for Steering Committee members, the PFIC community, and other rare disease organizations building their own patient-centered research infrastructure.

CONSORTIUM FORMATION

  • APRIL 2026

    Principles for Steering Committee Collaboration

    The Principles for Steering Committee Collaboration cover four areas: shared values, communication norms, decision-making processes, and strategies for addressing anticipated challenges. The Principles are designed to guide Steering Committee members during the development of the consortium’s governance charter and research agenda, and beyond.  They are based on input gathered during Steering Committee orientation sessions in March and April 2026 and were finalized by group agreement.

    Download

STEERING COMMITTEE MEMBER TRAINING CURRICULUM

  • MODULE 1

    What Is Patient-Centered CER & How Can I Participate?

    The following six virtual learning modules were designed to educate Consortium Steering Committee members about the key concepts in patient-centered comparative clinical effectiveness research (CER). Each module takes approximately 30 minutes to complete, and includes a brief comprehension survey. Other groups are welcome to use and adapt these modules. Email info@pfic.org for editable versions.

    This is Module 1 of 6 in the virtual learning curriculum. It draws largely on PCORI’s Research Fundamentals (see PCORI Research Fundamentals).

    Take Module 1

  • MODULE 2

    Building Effective Multi-Stakeholder Research Teams

    This is Module 2 of 6 in the virtual learning curriculum. It draws largely on PCORI’s Building Effective Multi-Stakeholder Research Teams.

    Take Module 2

  • MODULE 3

    Foundational Expectations for Partnerships in Research

    This is Module 3 of 6 in the virtual learning curriculum. It draws largely on PCORI’s Foundational Expectations for Partnerships in Research.

    Take Module 3

  • MODULE 4

    Patient Engagement in Research Governance

    This is Module 4 of 6 in the virtual learning curriculum. It draws largely on Strategies for Improving Patient Representativeness in Research Governance Report (2021) developed by the Patient Driven Research Communities Learning Network, convened by PCORI, NORC at the University of Chicago, and AcademyHealth.

    Take Module 4

  • MODULE 5

    Elements of Patient-Centered CER Research Questions

    This is Module 5 of 6 in the virtual learning curriculum. It draws largely on PCORI’s Research Fundamentals, the PCORI Methodology Report, and the PCORI Methodology Standards Academic Curriculum.

    Take Module 5

  • MODULE 6

    How Studies Answer Patient-Centered CER Questions

    This is Module 6 of 6 in the virtual learning curriculum This module picks up where Module 5 left off. Module 5 covered how to formulate a well-formed, patient-centered CER research question. Module 6 explores how those questions get answered — the types of study designs used in CER, what each design requires, and what that means for assessing whether a research question is feasible to pursue.

    Take Module 6