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.