How is the database funded? +
We have numerous contributors – see our Partnerships and Sponsors pages.
How many patients are in the database? +
18,000 men have been recruited to the registry.
Why do we need a Prostate Cancer Registry? +
This research project is aiming to provide a source of data to researchers wishing to study prostate cancer. It is hoped that the information collected will improve our understanding of prostate cancer, its diagnosis, treatment and management, and will lead to improvements in outcomes for future patients.
This research has been funded by a number of granting bodies including SA Health and collaborators.
This research is being conducted by the South Australian Prostate Cancer Clinical Outcomes Collaborative (SA-PCCOC), which includes medical specialists and researchers from across South Australia.
How do I Opt-Off the Registry? +
If you decide to opt-off or withdraw from this research project, please complete the withdrawal form provided to you.
If you do withdraw from the research study, the study doctor and relevant study staff will not collect additional personal information about you, although personal information already collected will be retained to ensure that the results of the research project can be measured properly and to comply with law. You should be aware that data collected up to the time you withdraw will form part of the research project results. If you do not want this to occur, you must tell the research team before you join the research study.
What does my participation in the database involve? +
Participation in the database does not involve any extra medical visits. We do ask participants to complete a short questionnaire about their symptoms before and after treatment. In total, six questionnaires will be requested over a five year period. You are able to decline further questionnaires at any time without affecting your clinical care or other aspects of the study.
There are no costs associated with participating in this research project, nor will you be paid.
How is patient privacy safeguarded? +
By participating in this study, you give permission for relevant research staff collecting and using personal information about you for the research project and related research in the future. Any information obtained in connection with this research project that can identify you will remain confidential. The data will be securely stored and all analyses will use only de-identified data meaning your identity will not be revealed. De-identified data will be used in a variety of health research projects including contribution to the national registry.
Who do I contact for more information? +
If you would like more information about the study please contact:
The Database Management Office
Telephone: (08) 8275 1064
Email: contactus@sa-pccoc.com
Or through our online contact form.
Do I have to take part in this research project? +
Participation in any research project is voluntary. If you do not wish to take part, you do not have to. If you decide to take part and later change your mind, you are free to withdraw from the project at any stage. If you do decide to take part, you will be given a Participant Information Sheet to keep. Your decision whether to take part or not to take part, or to take part and then withdraw, will not affect your routine treatment, your relationship with those treating you or your relationship with your care provider.
Does the research have ethics approval? +
Yes, the database has been approved by the Southern Adelaide Clinical Human Research Ethics Committee (SAC HREC). If you have any complaints about any aspect of the project, the way it is being conducted or any questions about being a research participant in general, then you may contact their office on (08) 8204 6453 or Email Health.SALHNOfficeforResearch@sa.gov.au.
What is SA-PCCOC? +
SA-PCCOC – The South Australian Prostate Cancer Clinical Outcomes Collaborative. This group of clinicians, researchers and patients is committed to improving prostate cancer outcomes for men around the world and especially in South Australia. The flagship project of the collaborative is a database which tracks men diagnosed with prostate cancer in SA. The database follows men with prostate cancer treated at the major SA metropolitan hospitals: the Royal Adelaide Hospital, The Queen Elizabeth Hospital, Flinders Medical Centre/Repatriation General Hospital, Noarlunga Hospital, Lyel McEwin Hospital and collaborating private institutions.
Will I benefit from participating? +
There is no benefit to you directly for participating in this research. We hope this research will improve the treatment of other patients in the future.
How is the database funded? +
We have numerous contributors – see our Partnerships and Sponsors pages.
Who can I contact regarding data access, use or collaboration? +
Please use our contact page.
Is data available for student projects? +
Yes, we encourage graduate students and medical trainees to undertake small and larger projects that are on offer with the database. We give assistance with ethics applications, formulating research questions and analysis. For more information on applying please check here.
How many patients are in the database? +
18,000 men have been recruited to the registry.
What clinical measures do you collect? +
- Transrectal Ultrasonography (TRUS) diagnostic biopsy
- Transperineal diagnostic biopsy
- Transurethral Resection of the Prostate (TURP)
- Treatment types:
Hormones: (Androgen Deprivation (Chemical/Surgical),Surgical Pathology: Radical Prostatectomy (Open retropubic and Robot assisted laparoscopic),
Active Surveillance/Watchful Waiting, Radiotherapy
- Electronic collection of prostate specific antigen (PSA) and Testosterone results
- Imaging results (CT, whole body bone scan, MRI, and PET/PSMA scans)
- Patient Questionnaires (collected at baseline, three months, six months, 12 months, two years and five years) using EPIC-26, IPSS, AQoL, 6D instruments.
- Gleason Grade (Primary/Secondary/Tertiary), Pathology Stage
- Histology sub-type (Acinar/Ductal)
How complete is the collection? +
In terms of numbers of patients, we estimate that we recruit 85% of diagnoses in SA (both public and private) in any one year
Who has access to the de-identified data? +
Researchers affiliated with medical or academic institutions. Interested researchers are encouraged to submit an Expression of Interest for consideration by the SA-PCCOC Research committee.
What outcomes does the database collect? +
Outcomes recorded include:
- Pathological outcomes after surgery;
- Biochemical recurrence after surgery or radiotherapy;
- Prostate cancer-specific death;
- All-cause mortality;
- Quality of life after treatment.
Where do you recruit patients who are represented in the database? +
We recruit patients from the major teaching hospitals in Adelaide: the Royal Adelaide Hospital (RAH), The Queen Elizabeth Hospital (TQEH) and Flinders Medical Centre/Repatriation General Hospital (RGH), Noarlunga Hospital and the Lyell McEwin Hospital. In addition, we recruit private patients from a number of private hospitals and clinics.
How do I get access to your data? +
