Lee Belinda, Gately Lucy, Lok Sheau Wen, Tran Ben, Lee Margaret, Wong Rachel, Markman Ben, Dunn Kate, Wong Vanessa, Loft Matthew, Jalili Azim, Anton Angelyn, To Richard, Andrews Miles, Gibbs Peter
Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
Department of Medical Oncology, Northern Health, Epping, VIC 3076, Australia.
Cancers (Basel). 2022 Aug 26;14(17):4131. doi: 10.3390/cancers14174131.
Traditional cancer registries have often been siloed efforts, established by single groups with limited objectives. There is the potential for registry data to support a broad range of research, audit and education initiatives. Here, we describe the establishment of a series of comprehensive cancer registries across the spectrum of common solid cancers. The experience and learnings of each registry team as they develop, implement and then use collected data for a range of purposes, that informs the conduct and output of other registries in a virtuous cycle. Each registry is multi-site, multi-disciplinary and aims to collect data of maximal interest and value to a broad range of enquiry, which would be accessible to any researcher with a high-quality proposal. Lessons learnt include the need for careful and continuous curation of data fields, with regular database updates, and the need for a continued focus on data quality. The registry data as a standalone resource has supported numerous projects, but linkage with external datasets with patients in common has enhanced the audit and research potential. Multiple projects have linked registry data with matched tissue specimens to support prognostic and predictive biomarker studies, both validation and discovery. Registry-based biomarker trials have been successfully supported, generating novel and practice-changing data. Registry-based clinical trials, particularly randomised studies exploring the optimal use of available therapy options are now complementing the research conducted in traditional clinical trials. More recent projects supported by the registries include health economic studies, personalised patient education material, and increased consumer engagement, including consumer entered data.
传统的癌症登记往往是孤立的工作，由目标有限的单个团体建立。登记数据有潜力支持广泛的研究、审计和教育倡议。在此，我们描述了一系列涵盖常见实体癌谱的综合癌症登记处的建立情况。每个登记处团队在开发、实施并将收集到的数据用于一系列目的的过程中的经验和教训，会以良性循环的方式为其他登记处的工作和成果提供信息。每个登记处都是多地点、多学科的，旨在收集对广泛调查最具兴趣和价值的数据，任何提出高质量研究计划的研究人员都可以获取这些数据。吸取的经验教训包括需要仔细且持续地管理数据字段、定期更新数据库，以及需要持续关注数据质量。登记处数据作为一种独立资源已经支持了众多项目，但与包含共同患者的外部数据集建立联系增强了审计和研究潜力。多个项目将登记处数据与匹配的组织标本相联系，以支持预后和预测生物标志物研究，包括验证和发现。基于登记处的生物标志物试验得到了成功支持，产生了新颖且改变实践的数据。基于登记处的临床试验，特别是探索现有治疗方案最佳使用方法的随机研究，现在正在补充传统临床试验中的研究。登记处支持的近期项目包括卫生经济学研究、个性化患者教育材料，以及提高消费者参与度，包括消费者录入数据。
