The Cancer Registry of Norway, Institute of Population-based Cancer Research, Department of Etiological Research, Postbox 5313 Majorstuen, 0304 Oslo, Norway.
Acta Oncol. 2010 Apr;49(3):368-77. doi: 10.3109/02841860903447069.
The Nordic countries have a long tradition of providing comparable and high quality cancer data through the national population-based cancer registries and the capability to link the diverse large-scale biobanks currently in operation. The joining of these two infrastructural resources can provide a study base for large-scale studies of etiology, treatment and early detection of cancer. Research projects based on combined data from cancer registries and biobanks provides great opportunities, but also presents major challenges. Biorepositories have become an important resource in molecular epidemiology, and the increased interest in performing etiological, clinical and gene-environment-interaction studies, involving information from biological samples linked to population-based cancer registries, warrants a joint evaluation of the quality aspects of the two resources, as well as an assessment of whether the resources can be successfully combined into a high quality study. While the quality of biospecimen handling and analysis is commonly considered in different studies, the logistics of data handling including the linkage of the biobank with the cancer registry is an overlooked aspect of a biobank-based study. It is thus the aim of this paper to describe recommendations on data handling, in particular the linkage of biobank material to cancer registry data and the quality aspects thereof, based on the experience of Nordic collaborative projects combining data from cancer registries and biobanks. We propose a standard documentation with respect to the following topics: the quality control aspects of cancer registration, the identification of cases and controls, the identification and use of data confounders, the stability of serum components, historical storage conditions, aliquoting history, the number of freeze/thaw cycles and available volumes.
北欧国家通过国家基于人群的癌症登记处和当前运行的各种大型生物库的链接功能，拥有提供可比且高质量癌症数据的悠久传统。这两种基础设施资源的结合可以为癌症病因学、治疗和早期检测的大规模研究提供基础。基于癌症登记处和生物库综合数据的研究项目提供了巨大的机会，但也带来了重大挑战。生物库已成为分子流行病学的重要资源，对开展病因学、临床和基因-环境相互作用研究的兴趣日益浓厚，这些研究涉及与基于人群的癌症登记处相关的生物样本信息，因此需要对这两种资源的质量方面进行联合评估，并评估这些资源是否可以成功结合成为高质量的研究。虽然生物样本处理和分析的质量通常在不同的研究中被考虑，但包括将生物库与癌症登记处链接在内的数据处理的物流是基于生物库的研究中被忽视的一个方面。因此，本文旨在根据北欧合作项目结合癌症登记处和生物库数据的经验，描述有关数据处理的建议，特别是生物库材料与癌症登记处数据的链接及其质量方面的建议。我们建议就以下主题制定标准文件：癌症登记的质量控制方面、病例和对照的识别、数据混杂因素的识别和使用、血清成分的稳定性、历史储存条件、分样历史、冻融循环次数和可用体积。
