Cancer Registries traditionally participate in several international programs to estimate and understand the burden of disease. Programs such as Concord, Nordcan, Rarecare and the European Cancer Information System (ECIS) enable citizens and policy makers to understand differences in cancer incidence, prevalence and survival across registries and geographies. These data have important implications for national health plans.
To reliably compare cancer statistics between geographical areas, a complex series of data checks and verifications are required to ensure data quality. These analyses are typically conducted centrally and allow the comparison of datasets from multiple cancer registries.
Vantage6 is the open source PHT solution developed by IKNL and partners. It is being extended to enable decentralised international cancer statistic. By connecting European cancer registries as FAIR data stations to Vantage6, quality checks and statistical analyses can be conducted without sharing sensitive patient-level data. A pilot is planned with the cancer registries of the Netherlands, Norway and Greater Poland. The first step will be to reproduce the existing quality checks and calculations of cancer statistics in a decentralized way. This will serve as stepping stone for further applications of the PHT. The PHT will allow the cancer registries to continue their important contributions to the international cancer research communities, while respecting patient privacy and local data sharing regulations.
Anticipated main result
An implementation of the Personal Health Train at three European cancer registries, enabling cancer statistics.
|Cooperating partners||IKNL, Cancer Registry of Norway, Greater Poland Cancer Registry|