Background

DEBATE CONTINUES AMONG THE SCIENTIFIC AND REGULATORY COMMUNITY REGARDING WHAT PATIENT CENTERED OUTCOMES ARE OF GREATEST IMPORTANCE THAT SHOULD BE ASSESSED IN PKD STUDIES. 

THE LACK OF EXPLICIT ASSESSMENT OF THE VIEWS OF DIFFERENT STAKEHOLDERS INCLUDING THE PATIENTS AND THEIR FAMILIES IS A MAJOR GAP IN KNOWLEDGE THAT HINDERS THE DEVELOPMENT OF MEANINGFUL COMPARATIVE EFFECTIVENESS RESEARCH (CER).

PCORI

PATIENTS CENTERED RESEARCH INSTITUTE

SETTING COMMUNITY DRIVEN PRIORITIES ABOUT POLYCYSTIC KIDNEY DISEASE CARE: ESTABLISHING A MULTI-STAKEHOLDER ENGAGEMENT EFFORT.

GOALS

TO ESTABLISH AN ADVISORY BOARD TO GUIDE THE PROJECT PROCESS FOR PARTNERSHIP BUILDING, COMMUNITY ENGAGEMENT, AND STRATEGIC PLANNING.

TO CREATE AN INFRASTRUCTURE THAT ALLOWS THIS COMMUNITY TO DISCUSS AND PRIORITIZE FUTURE RESEARCH FOCUS OF PKD.

TO BETTER UNDERSTAND DIFFERENT STAKEHOLDERS VIEWS ON THE MOST IMPORTANT OUTCOMES MEASURES THAT ARE PATIENT-CENTERED AND INFORMED BY THE BEST AVAILABLE EVIDENCE.

TO DEVELOP AND PRIORITIZE A LIST OF PATIENT-CENTERED QUESTIONS THAT COMPARE DIFFERENT MANAGEMENT OPTIONS.