PARTNER PROJECT

The 3rd PARTNER Project Consortium meeting took place on 30 January 2019 at the SIOP Europe office in Brussels, Belgium. The meeting was attended by 30 participants from 16 institutions.  The purpose of the 3rd Consortium Meeting was to discuss work packages progress and the possible activities for year 2 of the project implementation.  Participants were engaged in interactive discussions about their activities and priorities.

Gianni Bisogno opened the meeting and introduced the agenda.  This was followed by the Interim Report and 1st Periodic Technical Report, which describe the work carried out within year 1.  The next part covered the deliverables and milestones to be achieved in year 2.

Extensive discussions took place on the following topics:

  1. Evaluation of the project (by Ruth Ladenstein)
  2. Dissemination of the project (by Jackie Mellese)
  3. Analysis and harmonization of data acquisition of the existing national VRT registries (by Dominik Schneider)
  4. Creation of a European registry for paediatric patients with very rare tumours (by Gianni Bisogno)
  5. Standard of care recommendations for children with VRT (by Daniel Orbach)
  6. Integration of LHEAR countries in an EU platform dedicated to VRT in paediatric age including the creation of a standardised questionnaire to define the LHEAR countries current activities and needs in the field of paediatric VRT + inclusion of LHEAR countries in the creation of the VRT platform delineated in this project (by Ewa Bien)

Discussions also took place about the current website:

  1. The possibility to develop a dedicated PARTNER website instead of including PARTNER in the EXPeRT public website following the approval of the CCRI leader of WP2
  2. Identifying and choosing the IT Provider who will build the EU VRT Registry structure (WP5)

An open exchange took place about the possibility of implementing a dedicated PARTNER website.  Gianni Bisogno proposed creating an intranet section for all partners (e.g. uploading slides) and asked if the current dissemination activities budget could be used to revamp the PARTNER / EXPeRT website.  Gianni Bisogno underlined that although the purposes of PARTNER and EXPeRT are different, managing two different websites could be difficult.  Instead, assimilating both in a revamped and integrated website would be ideal.

Andrea Ferrari proposed having two dedicated people with scientific background (i.e. two young EXPeRT members) to feed and develop the content for the future website.  He also underlined the importance of social networks and proposed a dedicated Facebook page for PARTNER linked to EXPeRT to capture the interest from young people (students and young researchers).  This could be done as an experiment, success evaluated before making a decision.

The 4th Consortium meeting will be held during the SIOP Europe 2019 Annual Meeting in Prague (May 2019) and this meeting will once again aim to bring together all consortium members.

More information here.