Do investments in cancer registry databases and tools bring added value? NORDCAN as an example.

Background: In the 1990s, the large-scale collaboration (KIN) drew attention to the need for timely cancer statistics for cancer control planning in the Nordic countries. Supported by the Nordic Cancer Union (NCU), a web-based version of NORDCAN was continually developed by the Association of Nordic Cancer Registries (ANCR) from 2003, with website support and hosting by the International Agency for Research on Cancer (IARC). Despite empirical evidence of its global reach, the question of whether recurrent investment in NORDCAN brings added value was raised; we sought to formally assess this.

Methods: Scientific value was determined by extracting publications citing NORDCAN from PubMed. We compared the funds allocated to the KIN project and later Nordic studies on cancer predictions and survival, with those allocated to NORDCAN.

Results: 96 publications in 43 journals were retrieved. Two publication peaks, in 2010 and in 2016 relate to Nordic cancer survival and Danish age care projects, respectively. Papers citing NORDCAN increased substantially from 4 published in 2017 to the 24 papers in 2022. The integration of survival and prediction projects into NORDCAN reduced the costs of investment to one-quarter of the those required in earlier years, in real terms.

Discussion: User statistics and scientific output clearly points to NORDCAN bringing added value given resources expended, even with the additional costs imposed to ensure GDPR compliance. Research funding indicates that the databases and interactive tools are critical as both research and education resources. Nonetheless, a sustainable funding model is needed if NORDCAN is to continue to fulfill its utility in cancer control, health care planning and cancer research.