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Wednesday, June 27 • 8:00am - 9:15am
#307: Maintaining Patient Engagement in the Development of Patient-Reported Outcome (PRO) Measures

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Component Type: Session
Level: Basic
CE: ACPE 1.25 Knowledge UAN: 0286-0000-18-627-L04-P; CME 1.25; IACET 1.25; RN 1.25

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 Objectives

Recognize the opportunities for patient engagement through all stages of PRO development; Evaluate the degree of meaningful patient engagement in PRO development.


Sarah Clifford, PhD, MSc


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

Patient Affairs Perspective
Michele Rhee, MBA, MPH

Clinical Outcomes
Alison M. Skrinar

avatar for Sarah Clifford

Sarah Clifford

Senior Principal, Patient-Centered Outcomes, ICON Clinical Research, Inc
Sarah Clifford is Senior Principal and Division Leader for ICON’s Patient Centered Outcomes’ West Coast Division, where she oversees the development and execution of the PCO scientific strategy. She has 20 years of experience in patient-reported outcomes and health-services research... Read More →
avatar for Christine McSherry

Christine McSherry

Executive Director, Jett Foundation
Christine McSherry is the executive director of Jett Foundation, a non-profit dedicated to Duchenne muscular dystrophy, and the co-founder of Casimir Trials, a CRO that designs patient, caregiver, and observer reported outcomes that support regulatory approval and reimbursement. Christine... Read More →
avatar for Michele Rhee

Michele Rhee

Head of Patient Affairs, Enzyvant
As a member of the rare disease patient community for over a decade, Michele has dedicated her career to getting treatments to the patients who need them. Michele is a founding board member of Costs of Care and volunteers as a SAMbassador for SAMFund. She received her MBA from the... Read More →

Alison Skrinar

Vice President, Clinical Outcomes Research and Evaluation, Ultragenyx Pharmaceutical

Wednesday June 27, 2018 8:00am - 9:15am EDT
Room 153ABC Boston Convention and Exhibition Center 415 Summer Street, Boston, MA 02210 USA
  05: Patient Engagement, Session