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Maintaining Patient Engagement in the Development of Patient-Reported Outcome (PRO) Measures
Session Chair(s)
Sarah Clifford, PHD, MSC
Senior Principal, Patient-Centered Outcomes
ICON Clinical Research, Inc, United States
This session outlines the key issues in maintaining and maximizing patient engagement at all stages of the development of PRO and ePRO measures, with examples drawn from our experience of developing PRO measures. Recommendations are made regarding the most appropriate qualitative and quantitative approaches and a framework suggested for quantifying the degree of patient engagement during the multiple stages of scale development.
Learning Objective : Recognize the opportunities for patient engagement through all stages of PRO development; Evaluate the degree of meaningful patient engagement in PRO development.
Speaker(s)
Ways in Which Patient and Caregiver Recorded Outcomes and Assessments Will Affect Regulators, Industry, and Patients and Payers in the Coming Years
Christine McSherry, BSN, RN
Casimir LLC, United States
Chief Executive Officer
Patient Affairs Perspective
Michele Rhee, MBA, MPH
X4 Pharmaceuticals, United States
Vice President, Patient Affairs and Advocacy
Clinical Outcomes
Alison Skrinar, PHD, MPH
Ultragenyx Pharmaceutical, United States
Vice President, Clinical Outcomes Research and Evaluation