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

Autor:	Lee B; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Northern Health, Epping, VIC 3076, Australia.; Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.; School of Medicine and Dentistry, University of Melbourne, Parkville, VIC 3010, Australia., Gately L; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Cabrini Haematology and Oncology Centre, Malvern, VIC 3144, Australia., Lok SW; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia., Tran B; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia., Lee M; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Eastern Health, Melbourne, VIC 3151, Australia.; Department of Medical Oncology, Western Hospital, Melbourne, VIC 3021, Australia., Wong R; Department of Medical Oncology, Eastern Health, Melbourne, VIC 3151, Australia.; Eastern Health Clinical School, Monash University, Clayton, VIC 3800, Australia., Markman B; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Alfred Health, Melbourne, VIC 3004, Australia., Dunn K; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia., Wong V; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Ballarat Health Service, Ballarat Central, VIC 3350, Australia., Loft M; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia., Jalili A; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Northern Health, Epping, VIC 3076, Australia.; Department of Medical Oncology, Western Hospital, Melbourne, VIC 3021, Australia., Anton A; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Eastern Health, Melbourne, VIC 3151, Australia., To R; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Peter MacCallum Cancer Centre, Melbourne, VIC 3000, Australia.; School of Medicine and Dentistry, University of Melbourne, Parkville, VIC 3010, Australia., Andrews M; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; Department of Medical Oncology, Alfred Health, Melbourne, VIC 3004, Australia., Gibbs P; Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.; School of Medicine and Dentistry, University of Melbourne, Parkville, VIC 3010, Australia.; Department of Medical Oncology, Western Hospital, Melbourne, VIC 3021, Australia.
Jazyk:	angličtina
Zdroj:	Cancers [Cancers (Basel)] 2022 Aug 26; Vol. 14 (17). Date of Electronic Publication: 2022 Aug 26.
DOI:	10.3390/cancers14174131
Abstrakt:	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.
Databáze:	MEDLINE
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