Do investments in cancer registry databases and tools bring added value? NORDCAN as an example
Do investments in cancer registry databases and tools bring added value? NORDCAN as an example
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对癌症登记数据库和工具的投资会带来附加值吗？
作者：
H. Storm;S. Larønningen;F. Bray
在20世纪90年代，北欧国家大规模合作组织Kreftbildet i Norden （KIN）引起了人们对及时癌症统计数据用于癌症控制规划的关注。在北欧癌症联盟（NCU）的支持下，北欧癌症登记协会（ANCR）从2003年开始不断开发基于网络的NORDCAN版本，由国际癌症研究机构（IARC）提供网站支持和托管。尽管经验证据表明其全球影响力，但对NORDCAN的经常性投资是否带来附加值的问题被提出；我们试图对此进行正式评估。方法从PubMed中提取引用NORDCAN的文献，确定文献的科学价值。我们将分配给KIN项目和后来的北欧癌症预测和生存研究的资金与分配给NORDCAN的资金进行了比较。结果共检索到43种期刊96篇论文。2010年和2016年的两个出版高峰分别与北欧癌症生存和丹麦老年护理项目有关。引用NORDCAN的论文从2017年的4篇大幅增加到2022年的24篇。将生存和预测项目纳入NORDCAN后，按实际价值计算，投资成本降至前几年所需成本的四分之一。用户统计数据和科学成果清楚地指出，NORDCAN在资源消耗的情况下带来了附加价值，即使是为了确保GDPR合规性而施加的额外成本。研究经费表明，数据库和交互工具作为研究和教育资源是至关重要的。尽管如此，如果NORDCAN要继续发挥其在癌症控制、保健规划和癌症研究方面的作用，就需要一种可持续的筹资模式。
Abstract Background In the 1990s, the large-scale collaboration Kreftbildet i Norden (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.