The second Consortium Meeting of the ERN-PAEDCAN Partner: Paediatric Rare Tumours Network – European Registry took place on 15 September in Gdańsk, Poland. The purpose of this second Consortium Meeting was to discuss work packages progress and the possible activities for year 2 of the project implementation. The meeting was followed by the LHEAR (Low Health Expenditure Average Rate) countries PARTNER meeting.

The meeting was attended by 21 participants from 14 institutions.  The 2nd Consortium meeting was assessed as being of very high-quality by all participants, both in terms of content and organisation, as well as providing the opportunity for inter-partner communication.

Gianni Bisogno presented about the consultation system for VRT issue that could be used as a ‘collaborative’ structure to link national registries with the European Registry in which the national data are transferred.  This implies abandoning the use of CINECA system and to use new tools (e.g. CPMS vs. EXPeRT/ExPORNet VCS), which may be adapted to the European registry in progress.  He underlined the pros and cons of both systems.

Ruth Ladenstein underlined the feedback provided to project partners for corrective action, e.g. monitor-review-remedy model.  Indicators included frequency of deadlines being met to deliver reports, participation in meetings and telephone conferences and internal audit of project targets and resolution of problems. CCRI focused on solution-based monitoring and evaluation processes.

Next step includes (Task 6.3 – Elaboration of standard of cares documents):

The working group will designate two coordinators (for each identified tumour) who will elaborate a first draft of the document.  After interactions with WP members and revision from external experts, the subsequent draft will be further elaborated until the final draft is agreed on at a consensus meeting. The final draft will be summited for publication to a peer-reviewed journal to assure appropriate dissemination.  At least 4 VRT standard of care documents will be elaborated during the project.







More information about the PARTNER Project here.