Workshop on Patient-Reported Outcomes and Vision Related Quality of Life Questionnaires

Workshop Sponsors: National Eye Institute (NEI) and United States Food and Drug Administration (FDA)

Workshop Organizing Committee Members (in alphabetical order):  Emily Y. Chew, M.D. (NEI); Fraser Bocell, Ph.D. (FDA); Todd A. Durham, Ph.D. (Foundation Fighting Blindness); Malvina B. Eydelman, M.D. (FDA); Jason Gerson, Ph.D. (PCORI); Jimmy T. Le, Sc.D., M.A. (NEI); Flora Lum, M.D. (AAO); Tieuvi Nguyen, Ph.D. (FDA); Michelle G. Sandrian, Ph.D. (FDA); Michelle E. Tarver, M.D., Ph.D. (FDA); Cheri Wiggs, Ph.D. (NEI)

Workshop Description: The Workshop on Patient-Reported Outcomes and Vision Related Quality of Life Questionnaires is a virtual workshop that will be held on September 29, 2023, (Friday) from 10 am to 4 pm EDT. The purpose of the workshop is to highlight the importance of patients’ perspectives, patient-reported outcomes (“PROs”), and questionnaires to measure visual function and vision-related quality of life (“VFQs”) in vision research and clinical care. The goal is to identify future steps in the development of PROs and VFQs for a variety of ocular conditions and varying degrees of visual impairment. The workshop is open to the public to tune in as attendees, and it is anticipated that researchers from academia, industry, non-profits, other government agencies, patients, and care partners will attend.

Workshop Agenda (Tentative): 

1. Welcome & Purpose of the Workshop
2. NEI Strategic Plan and Quality of Life 
3. PCORI’s Perspective on Patient Reported Outcomes (PROs) 
4. AAO’s Perspective on PROS 
5. Introduction to Importance of PROs 
6. The Current State of PROs for Eye and Vision Conditions  
7. What are the Gaps? (Panel Discussion)
   • Researchers’/Clinicians’ Perspectives    
   • Patients’ Perspectives    
   • Industry’s Perspectives 
8. Ensuring Relevancy Across Populations/Demographics
9. Development of the NEI VFQ and the Current State        
10. Introduction to Techniques and Approaches for Developing/Administering PROs
11. Discussion of Techniques and Approaches for Developing/Administering PROs
12. Using the FDA Framework for Developing PROs 
13. General Discussion 
14. Adjournment

Abbreviations: AAO = American Academy of Ophthalmology; FDA = United States Food and Drug Administration; NEI = National Eye Institute; PCORI = Patient-Centered Outcomes Research Institute; PROs = Patient-reported outcomes; VFQ = Visual Function Questionnaire

This meeting will be live captioned. For questions or other reasonable accommodations to participate, please contact Dr. Emily Chew (echew@nei.nih.gov) or Dr. Jimmy Le (jimmy.le@nih.gov) at least 72 hours prior to the event.