A workshop on very rare tumours (VRT) was organised in collaboration with the European Cooperative Study Group for Paediatric Rare Tumors (EXPeRT) on the first day of the last ExPO-r-Net partners’ meeting in Padova. Chairs from national VRT groups presented the current situation in their respective country and specific problems associated with very rare childhood cancers (e.g. very low case numbers, limited resources etc.) were discussed.

The second day of the meeting focussed on two major topics:

Work Package specific progress reports:

• Latest dissemination activities (website, dissemination material, activities in meetings and conferences);
• The first results of ExPO-r-Net questionnaires to identify reference sites and existing tumour boards for a later roadmap identifying reference centres;
• ICT strategy and interoperability architecture for ExPO-r-Net;
• Self-assessment questionnaire for treatment centres in Eastern European and low income countries, to demonstrate their compliance with the ‘European Standards of Care for Children with Cancer’;
• Translation of the ‘Survivorship Passport’ in several languages, and identification of experts for a ‘Virtual Late Effects’ centre;
• Establishment of a VRT network with the help of the EpSSG.

Identification of a common process to build a Paediatric Oncology European Reference Network (PO-ERN):

The overall aim of ExPO-r-Net is to reduce inequalities in paediatric cancer patient survival across Europe. The project therefore aims to identify hubs of coordination which are willing to deliver cross-border advice or care, and the parallel integration of necessary IT-technologies. To reach this goal, an interactive meeting session was organised, where VRT experts shared their expertise about their VRT network and collaboration strategies with ExPO-r-Net were developed.

More information:

• ExPO-r-Net website