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

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

Journal

Cancers
ISSN: 2072-6694
Titre abrégé: Cancers (Basel)
Pays: Switzerland
ID NLM: 101526829

Informations de publication

Date de publication:
26 Aug 2022
Historique:
received: 18 07 2022
revised: 21 08 2022
accepted: 24 08 2022
entrez: 9 9 2022
pubmed: 10 9 2022
medline: 10 9 2022
Statut: epublish

Résumé

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.

Identifiants

DOI: 10.3390/cancers14174131 PMID: 36077668 PMC: PMC9454529
pubmed: 36077668
pii: cancers14174131
doi: 10.3390/cancers14174131
pmc: PMC9454529
pii:
doi:

Types de publication

Journal Article Review

Langues

eng

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Auteurs

Belinda 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.
ORCID: 0000-0002-0947-9834

Lucy Gately (L)

Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
Cabrini Haematology and Oncology Centre, Malvern, VIC 3144, Australia.
ORCID: 0000-0002-3003-3175

Sheau Wen 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.

Ben 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.

Margaret 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.

Rachel Wong (R)

Department of Medical Oncology, Eastern Health, Melbourne, VIC 3151, Australia.
Eastern Health Clinical School, Monash University, Clayton, VIC 3800, Australia.
ORCID: 0000-0002-4926-5689

Ben Markman (B)

Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
Department of Medical Oncology, Alfred Health, Melbourne, VIC 3004, Australia.

Kate 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.

Vanessa 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.

Matthew Loft (M)

Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
ORCID: 0000-0003-3267-4520

Azim 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.

Angelyn Anton (A)

Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
Department of Medical Oncology, Eastern Health, Melbourne, VIC 3151, Australia.

Richard 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.

Miles Andrews (M)

Walter & Eliza Hall Institute of Medical Research, Parkville, VIC 3052, Australia.
Department of Medical Oncology, Alfred Health, Melbourne, VIC 3004, Australia.
ORCID: 0000-0003-1231-8641

Peter 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.

Classifications MeSH