. 2022 Sep 2;12(9):e062139.

doi: 10.1136/bmjopen-2022-062139.

Developing an Australian Melanoma Clinical Outcomes Registry (MelCOR): a protocol paper

Dale Jobson^{1

2}, Benjamin Roffey², Renee Best³, Alison Button-Sloan⁴, Danica Cossio⁵, Sue Evans^{2

6}, Catherine Shang⁶, Julie Moore⁵, Christopher Arnold^{7

8}, Graham Mann^{9

10}, Mark Shackleton^{11

12}, H Peter Soyer^{13

14}, Rachel L Morton^{9

15}, John Zalcberg^{2

16}, Victoria Mar^{17

2}

Affiliations

¹ Victorian Melanoma Service, Alfred Health, Melbourne, Victoria, Australia.
² School of Public Health and Preventative Medicine, Monash University, Melbourne, Victoria, Australia.
³ Monash University, Melbourne, Victoria, Australia.
⁴ Australian Melanoma Consumer Alliance, Melbourne, Victoria, Australia.
⁵ Cancer Alliance Queensland, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
⁶ Victorian Cancer Registry, Cancer Council Victoria, Melbourne, Victoria, Australia.
⁷ Hodgson Associates, Melbourne, Victoria, Australia.
⁸ Biogrid Australia, Melbourne, Victoria, Australia.
⁹ Melanoma Institute Australia, The University of Sydney, Sydney, New South Wales, Australia.
¹⁰ The John Curtin School of Medical Research, Australian National University, Canberra, Australian Capital Territory, Australia.
¹¹ Central Clinical School and School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
¹² Department of Oncology, Alfred Health, Melbourne, Victoria, Australia.
¹³ The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, Queensland, Australia.
¹⁴ Dermatology Department, Princess Alexandra Hospital, Brisbane, Victoria, Australia.
¹⁵ NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
¹⁶ Department of Medical Oncology, Alfred Health, Melbourne, Victoria, Australia.
¹⁷ Victorian Melanoma Service, Alfred Health, Melbourne, Victoria, Australia victoria.mar@monash.edu.

PMID: 36691164
PMCID: PMC9442481
DOI: 10.1136/bmjopen-2022-062139

Developing an Australian Melanoma Clinical Outcomes Registry (MelCOR): a protocol paper

Dale Jobson et al. BMJ Open. 2022.

. 2022 Sep 2;12(9):e062139.

doi: 10.1136/bmjopen-2022-062139.

Authors

Affiliations

¹ Victorian Melanoma Service, Alfred Health, Melbourne, Victoria, Australia.
² School of Public Health and Preventative Medicine, Monash University, Melbourne, Victoria, Australia.
³ Monash University, Melbourne, Victoria, Australia.
⁴ Australian Melanoma Consumer Alliance, Melbourne, Victoria, Australia.
⁵ Cancer Alliance Queensland, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
⁶ Victorian Cancer Registry, Cancer Council Victoria, Melbourne, Victoria, Australia.
⁷ Hodgson Associates, Melbourne, Victoria, Australia.
⁸ Biogrid Australia, Melbourne, Victoria, Australia.
⁹ Melanoma Institute Australia, The University of Sydney, Sydney, New South Wales, Australia.
¹⁰ The John Curtin School of Medical Research, Australian National University, Canberra, Australian Capital Territory, Australia.
¹¹ Central Clinical School and School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.
¹² Department of Oncology, Alfred Health, Melbourne, Victoria, Australia.
¹³ The University of Queensland Diamantina Institute, The University of Queensland, Brisbane, Queensland, Australia.
¹⁴ Dermatology Department, Princess Alexandra Hospital, Brisbane, Victoria, Australia.
¹⁵ NHMRC Clinical Trials Centre, The University of Sydney, Sydney, New South Wales, Australia.
¹⁶ Department of Medical Oncology, Alfred Health, Melbourne, Victoria, Australia.
¹⁷ Victorian Melanoma Service, Alfred Health, Melbourne, Victoria, Australia victoria.mar@monash.edu.

PMID: 36691164
PMCID: PMC9442481
DOI: 10.1136/bmjopen-2022-062139

Abstract

Introduction: Australia has the highest incidence of melanoma in the world with variable care provided by a diverse range of clinicians. Clinical quality registries aim to identify these variations in care and provide anonymised, benchmarked feedback to clinicians and institutions to improve patient outcomes. The Australian Melanoma Clinical Outcomes Registry (MelCOR) aims to collect population-wide, clinical-level data for the early management of cutaneous melanoma and provide anonymised feedback to healthcare providers.

Methods and analysis: A modified Delphi process will be undertaken to identify key clinical quality indicators for inclusion in the MelCOR pilot. MelCOR will prospectively collect data relevant to these quality indicators, initially for all people over the age of 18 years living in Victoria and Queensland with a melanoma diagnosis confirmed by histopathology, via a two-stage recruitment and consent process. In stage 1, existing State-based cancer registries contact the treating clinician and provide an opportunity for them to opt themselves or their patients out of direct contact with MelCOR. After stage 1, re-identifiable clinical data are provided to the MelCOR under a waiver of consent. In stage 2, the State-based cancer registry will approach the patient directly and invite them to opt in to MelCOR and share identifiable data. If a patient elects to opt in, MelCOR will be able to contact patients directly to collect patient-reported outcome measures. Aggregated data will be used to provide benchmarked, comparative feedback to participating institutions/clinicians.

Ethics and dissemination: Following the successful collection of pilot data, the feasibility of an Australia-wide roll out will be evaluated. Key quality indicator data will be the core of the MelCOR dataset, with additional data points added later. Annual reports will be issued, first to the relevant stakeholders followed by the public. MelCOR is approved by the Alfred Ethics Committee (58280/127/20).

Keywords: dermatological tumours; health informatics; information management; protocols & guidelines; quality in health care.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Figures

**Figure 1**
Melanoma Clinical Outcomes Registry (MelCOR) consent process for State-based cancer registry.

**Figure 2**
Data flow through the Melanoma Clinical Outcomes Registry (MelCOR) and different levels of data identity. PROM, patient-reported outcome measure.

See this image and copyright information in PMC

References

1. Ferlay J, Soerjomataram I, Dikshit R, et al. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer 2015;136:E359–86. 10.1002/ijc.29210 - DOI - PubMed
1. Karimkhani C, Green AC, Nijsten T, et al. The global burden of melanoma: results from the global burden of disease study 2015. Br J Dermatol 2017;177:134–40. 10.1111/bjd.15510 - DOI - PMC - PubMed
1. Aitken JF, Youlden DR, Baade PD, et al. Generational shift in melanoma incidence and mortality in Queensland, Australia, 1995-2014. Int J Cancer 2018;142:1528–35. 10.1002/ijc.31141 - DOI - PubMed
1. Elliott TM, Whiteman DC, Olsen CM, et al. Estimated Healthcare Costs of Melanoma in Australia Over 3 Years Post-Diagnosis. Appl Health Econ Health Policy 2017;15:805–16. 10.1007/s40258-017-0341-y - DOI - PubMed
1. Australian Institute of Health and Welfare . Cancer data in Australia. Canberra: AIHW, 2021.

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

LinkOut - more resources

Full Text Sources
Medical
- MedlinePlus Health Information

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Developing an Australian Melanoma Clinical Outcomes Registry (MelCOR): a protocol paper

Affiliations

Developing an Australian Melanoma Clinical Outcomes Registry (MelCOR): a protocol paper

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical