This study evaluates the validity of the information in the Danish Lung Cancer Registry (DLCR). Since 2000, the DLCR has been a tool for monitoring interventions and outcome of all Danish lung cancer patients with the intent to streamline and improve treatment and survival. The DLCR receives information from the Danish Patient Registries in addition to clinical information from the treating physicians. In the year 2022, more than 50 papers have been published using DLCR as a data source. However, the DLCR has not previously been validated. A random sample of 1000 patients diagnosed with non-small cell lung cancer from 2014 to 2016 and recorded in the DLCR were included for validation. Medical records were reviewed and were considered as the “gold standard” to which data listed in the DLCR were compared. Information was retrieved from medical charts for all patients. Agreement on stage at diagnosis was 90.1 % (95 % CI 88.0–91.9) and on date of diagnoses was 93.8 (95 % CI 92.1–93.2). Agreement on smoking status in pack years (+/- 10 pack years) was 91.2 % (95 % CI 88.6–93.2). The positive predictive value of treatment intent was 87.4 (95 % CI 85.1–89.6). The data in the DLCR are complete, detailed and accurate. The comparison of data from the DLCR with the medical records revealed overall high validity of the data in the registry.

中文翻译：

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丹麦肺癌登记处：一项全国性验证研究

本研究评估了丹麦肺癌登记处 (DLCR) 中信息的有效性。自 2000 年以来，DLCR 一直是监测所有丹麦肺癌患者的干预措施和结果的工具，旨在简化和改善治疗和生存。除了来自治疗医生的临床信息外，DLCR 还接收来自丹麦患者登记处的信息。 2022年，使用DLCR作为数据源已发表论文50余篇。然而，DLCR 此前尚未经过验证。纳入 2014 年至 2016 年诊断为非小细胞肺癌并记录在 DLCR 中的 1000 名患者的随机样本进行验证。医疗记录经过审查并被视为与 DLCR 中列出的数据进行比较的“黄金标准”。从所有患者的医疗图表中检索信息。诊断时的分期一致性为 90.1% (95% CI 88.0–91.9)，诊断日期的一致性为 93.8 (95% CI 92.1–93.2)。包年（+/- 10 包年）吸烟状况的一致性为 91.2% (95% CI 88.6–93.2)。治疗意图的阳性预测值为 87.4 (95% CI 85.1–89.6)。 DLCR 中的数据完整、详细且准确。 DLCR 数据与医疗记录的比较显示，登记处数据的总体有效性较高。