Icelandic Cancer Registry, Icelandic Cancer Society, Reykjavik, Iceland.
Acta Oncol. 2012 Sep;51(7):880-9. doi: 10.3109/0284186X.2012.698751.
The nationwide Icelandic Cancer Registry (ICR) was established in 1954 and has been extensively used for research from the outset although formal quality assessment of the registry database has not previously been undertaken. In this paper we report the first formal evaluation of the comparability, validity, timeliness and completeness of the ICR.
Data from the ICR for the period 1955-2009 (41 994 cancer diagnoses) were used, applying established quantitative and semi-quantitative methods. In order to evaluate the completeness of the ICR, record linkage was performed between the ICR and the population-based Hospital Discharge Registry to identify potential missing cases for tumour diagnoses in 2000 and 2001.
The registration is in accordance with internationally accepted standards. It has high validity, but random variation in rates is prominent in this small population. Record linkage with the Hospital Discharge Registry revealed that in addition to the 2459 cancers registered in 2000-2001, 21 cases were missing, indicating 99.15% completeness. Tumours of the central nervous system constituted 71%, and haematological malignancies 19% of these missing entries.
The ICR has high completeness, validity and timeliness and is comparable to the cancer registries of the other Nordic Countries. As cancer registries have many important roles, it is of great importance that their data are at all times as complete and valid as possible. Thus the ICR aims to constantly improve and update the data gathering process.
冰岛癌症登记处（ICR）成立于 1954 年，自成立以来一直被广泛用于研究，尽管之前尚未对登记处数据库进行正式的质量评估。本文报告了对 ICR 的可比性、有效性、及时性和完整性的首次正式评估。
使用 ICR 1955-2009 年期间的数据（41994 例癌症诊断），采用了既定的定量和半定量方法。为了评估 ICR 的完整性，对 ICR 和基于人群的住院患者登记处进行了记录链接，以确定 2000 年和 2001 年肿瘤诊断的潜在漏报病例。
登记符合国际公认的标准。它具有很高的有效性，但在这个小群体中，发病率的随机变化很明显。与住院患者登记处的记录链接显示，除了 2000-2001 年登记的 2459 例癌症外，还有 21 例病例缺失，表明完整性为 99.15%。中枢神经系统肿瘤占 71%，血液恶性肿瘤占这些缺失病例的 19%。
ICR 具有较高的完整性、有效性和及时性，并且与其他北欧癌症登记处相当。由于癌症登记处具有许多重要作用，因此其数据始终尽可能完整和有效非常重要。因此，ICR 旨在不断改进和更新数据收集过程。
