RN-EYE is collaborating with all ERNs for the ERICA project.
The aim of ERICA WP3 is to facilitate in Europe the adoption of Patient Reported Outcome (PRO) and Observer Reported Outcomes (ObsRO) for rare diseases, standardized tools that consider patients and caregivers’ perspective in reporting outcomes and in the process making decision of health assessment.
You can still contribute to the creation of the Repository of Rare Diseases’ PROMs: a survey has been shared earlier in 2022 and ERN-EYE members participated actively. EURORDIS also helped by disseminating among ePAGs.
This survey is still open for those who have not contributed yet.