| 07 October 2016

Meeting on Patient Reported Outcomes, Washington DC, November 10th

Retina International will host an Open Workshop on Patient Reported Outcomes (PROs) Entitled: Functional Vision versus Visual Function – Working Towards Integrating the Patient Perspective in Retinal Research, on Thursday November 10, 2016 Washington DC.

As the global patient-led umbrella group representing the voice of people living with Retinal Degenerative Diseases, Retina International (RI) and its members believe that the outcomes of clinical trials and therapy development would benefit from better integrating what is important to the patient.

A preliminary multi-stakeholder workshop was held in Dublin, Ireland in 2015 resulting in a consensus view that a “White Paper” on Patient Reported Outcomes in Retinal Diseases was an urgent need. To advance this process, the Open Workshop at the National 4H Conference Centre in Washington DC on Nov 10, 2016 will provide a platform for discussion on current best practice in Patient Reported Outcome (PRO) and Patient Perspective Study (PPS) models for ophthalmology.

The objective of this meeting is to (1) analyze the status of PRO and PPS in ophthalmology and the field of retinal degeneration and (2) form a working group that will focus on harmonizing the perspectives of the regulators, scientists, clinicians and patients in a White Paper on the appropriate measures to be considered in upcoming studies. 

This publication will be designed to facilitate the improvement of risk/benefit assessment and also reimbursement of and access to novel therapies for Retinal Degenerative Diseases.

For further information contact christina.fasser@retina-international.org  

Functional Vision versus Visual Function – Working Towards Integrating the Patient Perspective


7.30 – 8:00       Registration/Coffee

8:00 - 8:05        Ms. Christina Fasser, President, Retina International: Welcome Remarks  

8:05 - 9:35        Session 1:

                        Current Models of Patient Reported Outcomes and Patient Preference Studies

                        Moderator Dr. Eberhart Zrenner: Co-Chair of Scientific and Medical Advisory Board, Retina International, Centre for Ophthalmology, University of Tubingen

8:05 – 8:15       Dr. Eberhart Zrenner: Introduction and Objectives of Meeting

8:15 – 8:25       Dr. Patricia Zilliox: Chief Drug Development Officer, Foundation Fighting Blindness, Brief update of outcomes from November 9 Meeting

8:25 – 8:40       Dr. Malvina Eydelman: Director, Division of Ophthalmic and Ear, Nose & Throat Device, FDA: Patient Preference Initiative (PPI)   

8:40 – 8:55       Dr Michelle Tarver: Medical Officer Ophthalmology -  FDA: Patient    Reported Outcomes (PROs)

8:55 – 9:15       Dr. Ron Hays NIH: Patient-Reported Outcomes Measurement Information System (PROMIS

9:15 – 9:35       Dr. Jane Moseley: The EMA Perspective

9:35 – 9:55       Coffee Break

9:55 – 11:50     Session 2:

                        Existing tools for PRO assessment in Ophthalmology

                        Moderator: Dr. Patricia Zilliox, Chief Drug Development Officer, Foundation Fighting Blindness Clinical Research Institute

9:55 – 10:05     Dr. José-Alain Sahel: University of Pittsburgh, School of Medicine, and Institut de la Vision, Paris, : Introduction and overview

10:05 – 10:25   Dr. Bernard Lepri: FDA, Functional outcomes in prosthetic vision Studies

10:25 – 10:40   Dr. Daniel Chung:  SPARK Therapeutics, Maze test in ultra-low vision

10:40 – 10:55   Dr.Gislin Dagnelie: Willmer Eye Institute Johns Hopkins University, PRO for assessment of ultra-low vision in heredodegerenative diseases

10:55 –11:10    Dr. Duane Geruschat: Applying the PRO-based assessment of ultra-low vision to the populations of retinal implants and sensory substitution.

11:10 – 11:30   Dr. Sheila West: Johns Hopkins University School of Medicine, Patient reported outcome in AMD Patients

11:30 – 11:50   Dr. Janet Sunness: Cross-sectional and longitudinal Data on QOL for Geographic Atrophy

11:50 – 12:30   Light Lunch

12:30 - 14:00    Session 3 :

                        Panel Discussion, Integrating the Patient Perspective

                        Moderator: Dr Elise Heon, Hospital for Sick Kids, Toronto

12:30 – 12:40   Dr Elise Heon: Hospital for Sick Kids, Toronto

                        Introduction to Panel Discussion

12:40– 12:50    Ms. Avril Daly: CEO Retina International, Introduction of patient testimonials

12:50 – 14:00   Panel Discussion

                        Panelists Statements: Each panelist will give a 5 minute statement 


  • Dr. Maria Burgstedt: UMEA University Sweden, Questionnaire to assess ultra-low vision in RP-Patients
  • Dr.Gislin Dagnelie: Wilmer Eye Institute Johns Hopkins University, Specific questionnaire for PRO in inherited retinal diseases with ultra-low vision:
  • Dr. Duane Geruschat: Wilmer Eye Institute Johns Hopkins University, Mobility and orientation assessment in ultra-low vision
  • Dr. Malvina Eydelman: FDA
  • Ms. Christina Fasser: President, Retina International
  • Dr. Robert Finger: Bonn,  Orientation test in very low vision
  • Dr. Jane Moseley: EMA
  • Dr. Eli Peli: Harvard University
  • Dr. Paul Sieving: NEI, NIH

14:00 - 15:00 Session 4:

                        Next Steps

Moderator: Dr. Eberhart Zrenner

14:00 – 14:50   Dr. Eberhart Zrenner: Formation of Working Group, Next Steps

14:50 – 15:00   Ms. Avril Daly, CEO Retina International, CLOSE


Organizers: Retina International; Foundation Fighting Blindness.

numbers of participants limited.











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