Leveraging Comprehensive Cancer Registry Data to Enable a Broad Range of Research, Audit and Patient Support Activities

Belinda Lee, Lucy Gately, Sheau Wen Lok, Ben Tran, Margaret Lee, Rachel Wong, Ben Markman, Kate Dunn, Vanessa Wong, Matthew Loft, Azim Jalili, Angelyn Anton, Richard To, Miles Andrews, Peter Gibbs

Research output: Contribution to journalReview ArticleResearchpeer-review

14 Citations (Scopus)

Abstract

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.

Original languageEnglish
Article number4131
Number of pages12
JournalCancers
Volume14
Issue number17
DOIs
Publication statusPublished - Sept 2022

Keywords

  • big data
  • cancer registry
  • data-driven research
  • digital health
  • registry-based trials

Cite this