Research

Data Access Request Form

Researchers wishing to access de-identified data from the PCOR-Vic registry will be required to complete a Data Access Form, and be accompanied by relevant ethics committee certification. For questions relating to the Data Access Policy please contact us at PCOR-Vic@monash.edu.

In general, requests from contributing clinicians, prostate cancer clinic staff and academic organisations will be fulfilled without charge.  Request from other bodies will be considered on a case-by-case basis by the PCOR-Vic Steering Committee and may be subject to a processing fee.

The data obtained from PCOR-Vic is used to conduct valuable research, which we hope will contribute to improvements in quality of care and outcomes for men diagnosed with prostate cancer. PCOR-Vic’s publications are listed below:

Reports

Sampurno F & Evans SM (eds) for the Victorian Prostate Cancer Clinical Registry Steering Commitee.

Media

We have included some examples of media related to our publications below:

Prostate cancer management has structural weakness that may hit thousands of men

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2018

Ettridge KA, Bowden JA, Chambers SK, Smith DP, Murphy M, Evans SM, Roder D, Miller CL. “Prostate cancer is far more hidden…”: Perceptions of stigma, social isolation and help‐seeking among men with prostate cancer. European Journal of Cancer Care. 2018 March; 27(2) :e12790. Available from, DOI: 10.1111/ecc.12790

Evans SM, Murphy DG, Davis ID, Sengupta S, Borzeshi EZ, Sampurno F, Millar JL. Interpolation to define clinical tumor stage in prostate cancer using clinical description of digital rectal examination. Asia-Pacific journal of clinical oncology. 2018 April 27. Available from, DOI: 10.1111/ajco.12875

Evans MA, Millar JL, Earnest A, Frydenberg M, Davis ID, Murphy DG et al. Active surveillance of men with low risk prostate cancer: evidence from the Prostate Cancer Outcomes Registry - Victoria. Medical Journal of Australia. 2018;208(10):439-443. Available from, DOI: 10.5694/mja17.00559

Ong WL, Evans SM, Millar JL. Under-utilisation of high-dose-rate brachytherapy boost in men with intermediate-high risk prostate cancer treated with external beam radiotherapy. Journal of Medical Imaging and Radiation Oncology. 2018 Apr 1;62(2):256-261. Available from, DOI: 10.1111/1754-9485.12699

2017

Beckmann K, O'Callaghan M, Vincent A, Roder D, Millar J, Evans S et al. Australian validation of the Cancer of the Prostate Risk Assessment Post-Surgical score to predict biochemical recurrence after radical prostatectomy. ANZ Journal of Surgery. 2018 Mar;88(3):E183-E188. Available from, DOI: 10.1111/ans.13954

Campbell JM, O'Callaghan ME, Raymond E, Vincent AD, Beckmann KR, Roder D et al. Tools for Predicting Clinical and Patient-reported Outcomes in Prostate Cancer Patients Undergoing Androgen Deprivation Therapy: A Systematic Review of Prognostic Accuracy and Validity. Clinical Genitourinary Cancer. 2017 Dec;15(6):629-634.e8. Available from, DOI: 10.1016/j.clgc.2017.03.011

Hoque DME, Kumari V, Hoque M, Ruseckaite R, Romero L, Evans SM. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review. PLoS ONE. 2017 September 8;12(9): e0183667. Available from, DOI: 10.1371/journal.pone.0183667

Hoque DME, Sampurno F, Ruseckaite R, Lorgelly P, Evans SM. Study protocol of an equivalence randomized controlled trial to evaluate the effectiveness of three different approaches to collecting Patient Reported Outcome Measures (PROMs) data using the Prostate Cancer Outcomes Registry-Victoria (PCOR-VIC). BMC Health Services Research. 2017 Jan 23;17(1). 75. Available from, DOI: 10.1186/s12913-017-1981-1

Ilic D, Evans SM, Allan CA, Jung JH, Murphy D, Frydenberg M. Laparoscopic and robotic-assisted versus open radical prostatectomy for the treatment of localised prostate cancer. Cochrane Database of Systematic Reviews. 2017 September 12; 2017 (9): Art. No.: CD009625. Available from, DOI: 10.1002/14651858.CD009625.pub2

Kirkman M, Young K, Evans S, Millar J, Fisher J, Mazza D et al. Men's perceptions of prostate cancer diagnosis and care: Insights from qualitative interviews in Victoria, Australia. BMC Cancer. 2017 Oct 27;17(1). 704. Available from, DOI: 10.1186/s12885-017-3699-1

Ong WL, Foroudi F, Evans S, Millar J. Large institutional variations in use of androgen deprivation therapy with definitive radiotherapy in a population-based cohort of men with intermediate- and high-risk prostate cancer. BJU International. 2017 Nov;120(S3):35-42. Available from, DOI: 10.1111/bju.13969

Beckmann KR, O'Callaghan M, Ruseckaite R, Kinnear N, Miller C, Evans S et al. Prostate cancer outcomes for men who present with symptoms at diagnosis. BJU International. 2017 Jun;119(6):862–871. Available from, DOI: 10.1111/bju.13622

Raymond E, O'Callaghan ME, Campbell J, Vincent AD, Beckmann K, Roder D et al. An appraisal of analytical tools used in predicting clinical outcomes following radiation therapy treatment of men with prostate cancer: A systematic review. Radiation Oncology. 2017 Mar 21;12(1). 56. Available from, DOI: 10.1186/s13014-017-0786-z

Sampurno F, Earnest A, Millar J, Frydenberg M, Murphy D, Delprado W, Evans S. Population-based study of grade progression in patients who harboured Gleason 3 + 3. World Journal of Urology. 2017 Nov; 35(11):1689-1699. Available from, DOI: 10.1007/s00345-017-2047-z

2016

Daniels CP, Millar JL, Spelman T, Sengupta S, Evans S. Predictors and rate of adjuvant radiation therapy following radical prostatectomy: A report from the Prostate Cancer Registry. Journal of Medical Imaging and Radiation Oncology. 2016;60(2):247-254. Available from, DOI: 10.1111/1754-9485.12407

Evans S, Nag N, Roder D, Brooks A, L Millar J, Moretti KL et al. Development of an International Prostate Cancer Outcomes Registry. BJU International. 2016;117(Supplement 4):60-67. Available from, DOI: 10.1111/bju.13258

Evans SM, Patabendi Bandarage V, Kronborg C, Earnest A, Millar J, Clouston D. Gleason group concordance between biopsy and radical prostatectomy specimens: A cohort study from Prostate Cancer Outcome Registry – Victoria. Prostate International. 2016 Dec 1;4(4):145-151. Available from, DOI: 10.1016/j.prnil.2016.07.004

Evans SM, Zalcberg JR. Enough is enough … a call to action to improve ethical and governance review processes in Australia. Internal Medicine Journal. 2016 Dec 1;46(12):1362-1364. Available from, DOI: 10.1111/imj.13289

Gordon, L., Tuffaha, H., James, R., Scuffham, P. Economic modelling of healthcare services for prostate cancer. Prostate Cancer Foundation Australia. 2016.  ISBN: 978-0-9945028-3-4.

Hoque DME, Kumari V, Hoque M, Ruseckaite R, Romero L, Evans SM. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review. PLoS ONE. 2017 Sep 1;12(9). e0183667. Available from, DOI: 10.1371/journal.pone.0183667

Nag N, Millar J, Davis ID, Costello S, Duthie JB, Mark S et al. Development of indicators to assess quality of care for prostate cancer. European Urology Focus. 2018 Jan;4(1):57-63. Available from, DOI: 10.1016/j.euf.2016.01.016

Ong WL, Evans S, Spelman T, Kearns PA, Murphy DG, Millar JL. Comparison of oncological and health-related quality of life outcomes between open and robot-assisted radical prostatectomy for localised prostate cancer – findings from the population-based Victorian Prostate Cancer Registry. BJU International. 2016;118(4):563-569. Available from, DOI: 10.1111/bju.13380

Patabendi Bandarage VK, Billah B, Millar JL, Evans S. Prospective evaluation of patient-reported quality of life outcomes after external beam radiation treatment for prostate cancer in Victoria: A cohort study by the Victorian Prostate Cancer Registry. Journal of Medical Imaging and Radiation Oncology. 2016;60(3):420-427. Available from, DOI: 10.1111/1754-9485.12433

Ruseckaite R, Beckmann K, O'Callaghan M, Roder D, Moretti K, Zalcberg J et al. Development of South Australian-Victorian Prostate Cancer Health Outcomes Research Dataset. BMC Research Notes. 2016 Jan 22;9. 37. Available from, DOI: 10.1186/s13104-016-1855-3

Ruseckaite R, Beckmann K, O'Callaghan M, Roder D, Moretti K, Millar J et al. A retrospective analysis of Victorian and South Australian clinical registries for prostate cancer: Trends in clinical presentation and management of the disease. BMC Cancer. 2016;16(1). 607. Available from, DOI: 10.1186/s12885-016-2655-9

Ruseckaite R, Sampurno F, Millar J, Frydenberg M, Evans S. Diagnostic and treatment factors associated with poor survival from prostate cancer are differentially distributed between regional and metropolitan Victoria, Australia. BMC Urology. 2016;16(1). 54. Available from, DOI: 10.1186/s12894-016-0172-4

Ruseckaite R, Evans S, Millar J, Holton S, Mazza D, Fisher J et al. GPs’ insights into prostate cancer diagnosis and care in regional Victoria, Australia. The Qualitative Report. 2016 Dec 22;21(12):2365-2379. 11.

Sampurno F, Earnest A, Kumari P, Millar J, Davis I, Murphy D, Frydenberg M, Kearns P, Evans S. Quality of care achievements of the Prostate Cancer Outcomes Registry–Victoria. Med J Aust. 2016 May; 204 (8): 319. Available from, DOI: 10.5694/mja15.01041

Sampurno F, Ruseckaite R, Millar JL, Evans SM. Comparison of patient-reported quality-of-life and complications in men with prostate cancer, between two modes of administration. Clinical Genitourinary Cancer. 2016 Aug;14(4):284-289. Available from, DOI: 10.1016/j.clgc.2015.12.016

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2015

Evans SM, Lin D, Ilic D, Millar J, Murphy D, et al. Monitoring Quality of Care in Men Diagnosed with Prostate Cancer: Developing Consensus Quality Indicators Using Modified-Delphi Methodology. Journal of Epidemiology Preventive Medicine. 2015; 1(2): 109. Available from, DOI: 10.19104/jepm.2015.109

Roth H, Millar JL, Cheng AC, Byrne A, Evans S, Grummet J. The state of TRUS biopsy sepsis: readmissions to Victorian hospitals with TRUS biopsy-related infection over 5 years. BJU International. 2015;116(S3): 59-53. Available from, DOI: 10.1111/bju.13209

Weerakoon M, Papa N, Lawrentschuk N, Evans S, Millar J, Frydenberg M et al. The current use of active surveillance in an Australian cohort of men: A pattern of care analysis from the Victorian Prostate Cancer Registry. BJU International. 2015;115(S5):50-56. Available from, DOI: 10.1111/bju.13049

Wilkins S, Best RL, Evans SM. Need for a roadmap for development of a coordinated national registry programme. Internal Medicine Journal. 2015 Nov 1;45(11):1189-1192. Available from, DOI: 10.1111/imj.12898

2014

Evans SM, Millar J, Frydenberg M, Murphy D, Davis I, Spelman TD et al. Positive surgical margins: rate, contributing factors and impact on further treatment: findings from the Prostate Cancer Registry. BJU International. 2014;114(5):680 - 690. Available from, DOI: 10.1111/bju.12509

Weerakoon M, Evans S, Millar JL, Murphy DG, Frydenberg M, Bolton D et al. Do active surveillance patients in Victoria, Australia, meet the criteria for PRIAS?. 2014. Abstract from Urological Society of Australia and New Zealand Annual Scientific Meeting, Brisbane, Australia. Available from, DOI: 10.1111/bju.12618

Weerakoon M, Evans S, Millar JL, Murphy D, Lawrentschuck N. Current use of active surveillance in Australia – a patterns of care analysis from the Prostate Cancer Registry. 2014. Abstract from Urological Society of Australia and New Zealand Annual Scientific Meeting, Brisbane, Australia. Available from, DOI: 10.1111/bju.12618

2013

Evans SM, Millar J, Davis I, Murphy D, Bolton DM, Giles GG et al. Patterns of care for men diagnosed with prostate cancer in Victoria from 2008 to 2011. Medical Journal of Australia. 2013;198(10):540 - 545. Available from, DOI: 10.5694/mja12.11241

Evans S, Millar JL, Wood J, Davis I, Bolton DM, Giles GG et al. The Prostate Cancer Registry: monitoring patterns and quality of care for men diagnosed with prostate cancer. BJU International. 2013;111(4 (Part B)):158 - 166. Available from, DOI: 10.1111/j.1464-410X.2012.11530.x

Millar J on behalf of the PCR Steering Committee. Quality of life outcomes for prostate cancer treatment in Australia.2013 Genitourinary Cancers Symposium (ASCO, ASTRO and SUO). February 14-16th Orlando, Florida.

Murphy DG, Evans SM, Millar JL, Davis ID, Bolton D, Giles GG et al. Importance of a prostate cancer registry for describing changing patterns of care. 2013. Abstract from Urological Society of Australia and New Zealand Annual Scientific Meeting, Melbourne, Australia. Available from, DOI: 10.1111/bju.12069

2012

Evans SM on behalf of the PCR Steering Committee. The Prostate Cancer Registry: an update on progress and achievements. Southern Metropolitan Integrated Cancer Services (SMICS) Genito-Urinary Tumour Group Meeting August 6th 2012. Melbourne.

Evans SM & Brennan A. How to Build an Effective Clinical Registry Consultative Council for Human Research Ethics forum. Aug 24th 2012. Melbourne.

Frydenberg M on behalf of the PCR Steering Committee "Contemporary patterns of disease, patients and management characteristics from the Victorian PCR. ANZUP Annual Scientific Meeting. July 15-17 2012. Sydney.

Ilic D, Evans S, Murphy D, Frydenberg M. Laparoscopic versus open prostatectomy for the treatment of localised prostate cancer (Protocol). Cochrane Database of Systematic Reviews. 2012;(2). Available from, DOI: 10.1002/14651858.CD009625

Kiven L, Evans SM, Frydenberg M, Murphy D, Millar J on behalf of the PCR Steering Committee. Contemporary outcomes of radical prostatectomy in a population based registry. 13th Australasian Prostate Cancer Conference. 1 August 2012. Melbourne.

Murphy D on behalf of the PCR Steering Committee "Enormous change in patterns of care in Victoria: data from the prostate cancer clinical registry." 13th Australasian Prostate Cancer Conference. 1 August 2012. Melbourne.

2011

Board N, Evans SM, Cameron PA, McNeil JJ, Johnson N. National reporting arrangements for clinical quality registries. Health Informatics Society of Australasia (HISA) Data Governance Conference Melbourne 19-20 May 2011.

Evans S, Scott I, Johnson N, Cameron P, McNeil J. Development of clinical-quality registries in Australia: The way forward. Medical Journal of Australia. 2011;194(7):360 - 363.

Evans SM, Millar J, McNeil. Audit and Registry. 20th Annual Scientific Meeting of the Australasian Health Research Data Managers Association. 17-18 March 2011.

Evans SM, Cameron PA, Reid C. Data governance at the coalface. Health Informatics Society of Australasia (HISA) Data Governance Conference Melbourne 19-20 May 2011.

Evans SM, Millar J, McNeil JJ Who should have access to identifiable patient and clinician-level data in clinical registries? Health Informatics Society of Australasia (HISA) Data Governance Conference Melbourne 19-20 May 2011.

Evans SM, Millar J, Wood J, McNeil JJ The importance of aligning registries monitoring quality and safety with nationally endorsed Operating Principles for Clinical Quality Registries. International Society for Quality (ISQua) 28th International Conference Hong Kong September 15-17 2011.

Millar J and Evans S on behalf of the Prostate Cancer Clinical Registry Steering Committee. Introducing the Prostate Cancer Clinical Quality Registry. Barwon South Western Regional Integrated Cancer Service Urology Multidisciplinary Meeting.  5th April 2011.

Millar J on behalf of the Prostate Cancer Steering Committee The Prostate Cancer Registry: Contemporary Patterns of Prostate Cancer Presentation, Management and Outcomes in Victoria 12th Australasian Prostate Cancer Conference Melbourne 1 August 2011.

Millar J on behalf of the PCR Steering Committee. Contemporary Patterns of Prostate Cancer Presentation, Management and Outcomes in Victoria 12th Australasian Prostate Cancer Conference 2011.Melbourne, Vic. August 3-5, 2011.

Shub, M on behalf of the PCR Steering Committee presentations to the National Support & Advocacy Committee of PCFA and the Vic/Tas Chapter Council of PCFA, 2011. [Conference Presentation]

Shub, M on behalf of the PCR Steering Committee presentations to the following prostate cancer support groups: Bayside Prostate Cancer Support Group, Prostate Heidelberg, Prostate Waverley, Melbourne and Penninsula Prostate and Partners Support Group, Ringwood Prostate Cancer Support Group, Bass Coast Prostate Cancer Support Group, Diamond Valley Prostate Cancer Support Group, 2011. [Conference Presentation]

Wood J, Evans SM, Millar J et al. Development of a clinical registry to monitor quality of care for men diagnosed with prostate cancer Cabrini Research Monday 15 August 2011.

2010

Evans SM on behalf of the Prostate Cancer Clinical Registry Steering Committee. Pilot of a prostate cancer registry. 11th National Prostate Cancer Symposium 11-13 August 2010.

Evans SM, Millar on behalf of the Prostate Cancer Clinical Registry Steering Committee. Updating clinicians on the prostate cancer registry. Monash Comprehensive Cancer Consortium Research Seminar. 14th April 2010.

McNeil JJ, Evans SM, Johnson NP, Cameron P. Clinical-quality registries: their role in quality improvement. Medical Journal of Australia. 2010;192(5):244 - 245.

Millar J and Evans SM on behalf of the Prostate Cancer Clinical Registry Steering Committee. Introducing the prostate cancer clinical registry. Cancer Clinical Outcomes Group (CCOG) Department of Human Services 15 April 2010. Melbourne.

Millar J on behalf of the Prostate Cancer Clinical Registry Steering Committee.  The prostate cancer registry – developing useful data sources to guide quality improvement and practice change. Integrated Cancer Centres Symposium 8-9 September 2010.

Millar J Evans SM on behalf of the Prostate Cancer Clinical Registry Steering Committee. Pilot of a Prostate Cancer Clinical Registry. Victorian Cooperative Oncology Group 21 October 2010. Melbourne.