Patient Centred Expert Working Group (PCEWG)

ERICA WP3 Patient Centred Expert Working Group (PCEWG) meetings:

Previous meeting 31-5-2023 ERICA WP3 ‘Patient centred research’ Expert Working Group

Meeting is reviewable and Slideck available

During the ERICA WP3 ‘Patient centred research’, the Expert Working Group Kick-off Meeting was presented during the first part, the action plan to the Expert Working Group and participants. Specifically, it has been described the Questionnaire Database Presentation – PROQOLID™, the Orphanet Disability questionnaire (ODQ), and the strategy for the RD Clustering, Questionnaire Coding and PROs selection.

Whereas during the second part of the meeting, an interactive exercise has allowed to tackle some needs for the use of PROMS repository, the ideal context of use of RDs PROMs, the expected search engine terms to be inserted in the repository and the expected results.

Results of this exercise are under analysis and will be used for customizing the repository of existing PRO and ObsRO for Rae Disease adapting it as much as possible on expressed needs and expectations.

The Kick-off meeting of WP3 Patient Centred Expert Working Group (PCEWG) was held in two consecutive sessions:

Session I was dedicated to present the work done so far for the identification and codification of instruments for the assessment of Patient Reported Outcomes (PRO) in rare diseases (RD). Session I gave the frame for an open discussion in Session II to better understand and define the RDs community needs in terms of building a repository of PROMs for RD.

Videos available.

ERICA WP3 ‘Patient centred research’ Expert Working Group