ExPO-r-Net relied on active involvement of professionals to achieve high-quality, accessible and cost-effective healthcare for childhood cancer all across Europe. In turn, professionals were also set to benefit from the project deliverables and innovation.
Access to and exchange of information
Due to the heterogeneity and rarity as well as the age group and treatment complexity of childhood cancers, professionals exchanged information across borders, particularly on rare or difficult-to-treat cases.
By identifying and creating real-time expert centres and tumour boards and utilising interoperability and standardisation technologies, ExPO-r-Net supported health professionals seeking advice prior to cross-border patient referral. More specifically,
- ExPO-r-Net created a clear roadmap to trace expert reference centres and tumour advisory boards for healthcare providers.
- ICT and eHealth solutions supported by the project helped professionals work more efficiently and exchange information beyond local institutional borders
Late effects and follow up
Through its Survivorship Passport activities, ExPO-r-Net identified experts for different late complications of childhood cancer treatment. With individual late effects being rare, these experts provided the best available advice for individual cases but also collected the information in a prospective way to increase knowledge.
- Identified experts became part of a virtual late effects network/centre to which healthcare professionals can turn to with questions and get advice on follow-up, surveillance and interventions.
ExPO-r-Net aimed not only to provide an accurate diagnosis and high-quality, evidence-based treatment to patients, but also to establish a solid basis for further improvements through collaborative research. For instance:
- A European cooperative group on Very Rare Tumours (VRT) formed to improve VRT care for children, establish common VTR standards, and provide a framework to support clinical and biological research on VRT.
Transfer of expertise to the rare diseases community
The information generated by ExPO-r-Net can be disseminated and transferable to the wider EU rare disease community and used as a model outside the paediatric cancer community.