Rare cancers account for about 20% of all new cancer diagnosed in Europe. Due to their low incidence, they may be difficult to diagnose and manage. Population based cancer registries are the best source of information to define rare cancers burden as well as to assess the quality of care for rare cancers and the impact of the health care organization on their prognosis.
A series of analyses has been conducted to describe the burden of rare cancers in Europe as well as in Korea, Japan and Taiwan. Where incidence (i.e. number of newly diagnosed cases) and survival can be calculated at each cancer registry, some analyses to interpret survival differences across countries require the combination of datasets. The Personal Health Train will enable such analyses, as patient-level data cannot be shared between the partners. The aim of the first study -- using the PHT -- is to assess whether head and neck cancer survival differences observed between Europe and the Asian countries involved in RARECAREnet Asia are due to the different distribution of known prognostic factor (e.g. head and neck cancer sub-site, stage etc.).
The infrastructure (the rails) for these studies (journeys) is fully operational. Currently, an algorithm (a train) is being developed to conduct the complex survival analyses on the federated data sets.
Coordinated by the Istituto Nazionale dei Tumori di Milano in collaboration with the National Cancer Center, Japan