The EURORDIS Rare Barometer Project is developing a global survey on diagnosis. EURORDIS is working with Rare Voices Australia (RVA) to include Australian perspectives in this work. EURORDIS is keen to talk to Australian rare disease organisation leaders to help them develop the final questionnaire.
The Project Team has decided to pursue a different approach to the methodology. Instead of conducting one-to-one interviews, they will invite patient advocates to a live online community where they can take part in individual activities and collective discussions with other participants.
The online community will take place from 20 – 24 September. And include patient advocates from Europe as well as the identified target countries, which include Australia. Participants will take part in 15-20 minutes of activity each day for five days on an online platform where new questions will be posted, and new discussions will be assigned each day by a moderator.
Participants are asked to pre-register by filling in this pre-registration form no later than 16 September.
The online platform will be facilitated by an independent research institute (OpinionWay Healthcare). Participants can answer questions by posting a text, image or video. During this phase, there are only limited places available on the platform, and participants will be selected based on the study criteria by EURORDIS.
RVA staff have preregistered but were also keen to open up this opportunity to RVA Partner organisations with an interest in diagnosis and/or informing research design.