ExPO-r-Net engaged in a multitude of value added activities towards its Mission and Vision and was set to produce a set of deliverables in the process.

3 Activity Areas:

  • Identifying health inequalities between EU Member States;
  • Supporting cooperation on cross-border healthcare and mobility of patients, healthcare professionals and information;
  • Innovating healthcare delivery.

Methods & Means:

  • Collection of evidence on current national deficits in healthcare resources for specific tumour types in view of identifying patient groups eligible for cross-border healthcare and the reference centres that can act as ERN referral sites;
  • Questionnaires addressed to centres in different EU Member States to understand the current functioning of their tumour boards;
  • Development of definitions and principles needed for the ERN accreditation process;
  • Expanding the audience for dissemination of project activities and results by integrating stakeholders of SIOPE (European Society for Paediatric Oncology) and pre-existing EU projects;
  • Development of a consensus definition of Very Rare Tumours (VRT) in collaboration with adult oncologists.

ExPO-r-Net Deliverables:

  • Paediatric oncology reference roadmap: containing approved expert referral sites and tumour advisory boards
  • Hubs of coordination: Referral centres providing highly specialised healthcare
  • Very rare tumours expertise: The needs of very rare childhood cancer types and subgroups were identified through a network of cooperating groups and institutions
  • ICT and e-Health tools: to facilitate movement of information and knowledge rather than patients, whenever possible, keeping the patient within the supportive family and language environment.
  • Survivorship Passport: already envisaged as part of several previous or ongoing projects, this instrument was developedĀ  for long-term follow-up of childhood cancer survivors across Europe.

For more information on how activities were carried out and deliverables achieved, please refer to the information on ExPO-r-Net Work Packages (link)


CCRI - Children’s Cancer Research Institute, Zimmermannplatz 10, 1090 Vienna, Austria

Project Coordinator

Professor Ruth Ladenstein

Project Manager

Barbara Brunmair, Priv. Doz. Dr.

Dissemination Management Team

SIOP Europe (SIOPE), the European Society for Paediatric Oncology

Address: Av. E. Mounier 83, 1200 Brussels, Belgium