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.
- 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 developed 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)