Background: Childhood cancers (CC) are rare and treatable; however, survival rates vary across Europe, with poorer outcomes in Eastern countries. Stage at diagnosis is one of the major prognostic factors. The BENCHISTA-Ita project aims to promote the use of the Toronto Guidelines by population-based cancer registries (PBCR) to standardize stage at diagnosis data collection. In Italy, regional cancer registries ensure data quality, while national clinical registries centralize pediatric cancer data. The aim of the study is to promote the linkage between PBCRs and national clinical registries to enhance data completeness. This study presents the results of linking BENCHISTA-Ita neuroblastoma cases with the Italian Neuroblastoma Registry (RINB) as a pilot study.Methods: The linkage process involved probabilistic matching using R software, considering variables such as sex, year of birth, and residence at diagnosis. The study included 294 neuroblastoma cases from BENCHISTA-Ita and 578 from RINB, diagnosed between 2013 and 2017.Results: Results showed that 272 of 294 BENCHISTA-Ita cases matched with RINB cases, improving the completeness of clinical variables such as stage at diagnosis, N-Myc amplification, and relapse/progression. The linkage increased the completeness of clinical variables in PBCR, such as stage at diagnosis from 81% to 99%, N-Myc from 47% to 86%, and relapse/progression from 68% to 98%. Additionally, the linkage improved RINB’s follow-up completeness from 59% to 97% and added new cases in both PBCR and RINB.Conclusions: This linkage demonstrates the potential to enrich both databases, improving data quality and harmonization of cancer indicators. The study highlights the importance of collaboration between PBCRs and clinical registries to ensure comprehensive data collection and enhance more informative population-based studies. Future efforts will focus on expanding the linkage to other national clinical registries.
背景：儿童癌症虽属罕见但可治疗，然而欧洲各国的生存率存在差异，其中东欧国家预后较差。诊断分期是主要预后因素之一。BENCHISTA-Ita项目旨在推动基于人群的癌症登记处（PBCR）采用多伦多指南，以实现诊断分期数据收集的标准化。在意大利，地区癌症登记处负责确保数据质量，而国家临床登记中心则集中管理儿童癌症数据。本研究旨在促进PBCR与国家临床登记中心的数据链接，以提升数据完整性。作为试点研究，本文展示了BENCHISTA-Ita神经母细胞瘤病例与意大利神经母细胞瘤登记库（RINB）的链接成果。 方法：链接过程采用R软件进行概率匹配，纳入性别、出生年份、诊断时居住地等变量。研究涵盖2013年至2017年间确诊的294例BENCHISTA-Ita神经母细胞瘤病例和578例RINB病例。 结果：结果显示，294例BENCHISTA-Ita病例中有272例与RINB病例成功匹配，显著提升了诊断分期、N-Myc基因扩增状态及复发/进展等临床变量的完整性。通过数据链接，PBCR中临床变量的完整率得到显著提升：诊断分期从81%提高至99%，N-Myc基因状态从47%升至86%，复发/进展信息从68%增至98%。此外，链接使RINB的随访完整率从59%提升至97%，并为PBCR和RINB双方均补充了新病例。 结论：本次数据链接证明了两大数据库通过协同互补提升数据质量、优化癌症指标统一性的潜力。研究凸显了PBCR与临床登记中心协作对确保全面数据收集、推进高质量人群研究的重要性。未来工作将重点扩展与其他国家临床登记中心的数据链接。
肿瘤(癌症)患者之家