All men who are eligible for inclusion on the NSW PCCR will receive a letter of introduction and a Participant Information Statement. The Statement will outline the purpose of the NSW PCCR and explain what participation involves. It will help potential participants decide if they want to be included on the Registry.
Eligibility will be assessed according to the following criteria:
For men who are from a non-English speaking background (NESB), a Language Assistance Sheet will be sent including details of the Translating and Interpreting Service (TIS). TIS is a free interpeting service for non-English speakers.
If you receive an invitation letter from the NSW PCCR and would like to participate, you do not need to do anything at all.
If we do not hear from you 14 days after sending you an invitation they will commence data collection about your prostate cancer and episodes of care.
An experienced NSW PCCR Officer may telephone you to ask questions about your urinary, bowel, sexual and hormonal health after your diagnosis or treatment of prostate cancer.
The information collected by the Registry will be used to assess patterns of care and monitor the quality of care across sites to ensure the delivery of the best possible health service to men with prostate cancer.
We understand the diagnosis of prostate cancer has a big impact on men and their families, friends or carers. The NSW PCCR does not have the skills or expertise to provide a specialised counseling service or give professional medical advice.
We encourage men to speak to their doctors if they are concerned about their diagnosis. They may also find the following support sites useful.
If you have received a letter from us, please read the information carefully and contact us if you have any questions.
If you do not opt out we will collect data about your prostate cancer from the NSW Cancer Registry, participating hospitals and clinicians involved with your care.
We may then contact you 12 months after your diagnosis or treatment of prostate cancer to ask you a few questions about your urinary, bowel, sexual and hormonal health. If completed over the telephone these questions will take between 5 to 15mins to complete. You are free to not answer any of the questions or skip over them and come back at a later stage during the phone call.
If you do not have time or do not want to complete the questionnaire over the telephone you can request that the questionnaire be posted or emailed to you so that you can complete it yourself and forward your responses to the Registry.
Participation in the NSW PCCR is voluntary.
If you do not wish to participate, please contact us on the 1800 992 028 or email us at CINSW-PCCR@health.nsw.gov.au. If we have not heard from you within 14 days we will assume that you are happy for us to collect this information.
Feel free to discuss the Registry with your family or treating clinician and please do not hesitate to contact us If you have any questions.
You will receive indirect benefits from the Registry. A major benefit will be the ability to monitor quality of care across sites to ensure the delivery of the best possible health service to men with prostate cancer.
Participation is entirely voluntary and it is entirely your choice whether or not you take part.
If you decide to take part and later change your mind, you are free to withdraw at a later stage. Your decision whether to take part or not, or to take part and then withdraw, will not affect your care or your relationship with your treating hospital or specialist
Data within the Registry will be identifiable. Identifiable data refers to your name, date of birth and address.
This information is required to enable the Registry to collect data about your care from participating hospitals and clinicians and to enable accurate linkage to the NSW Cancer Registry and the Prostate Cancer Outcomes Registry Australia and New Zealand.
It will be safeguarded by CINSW policies and procedures, and state laws and guidelines governing privacy and confidentiality laws. Information will be stored securely, with access restricted only to Registry staff.
The NSW Population and Health Services Research Ethics Committee (NSW PHSREC) have approved the establishment of the NSW Prostate Clinical Cancer Registry.
The Prostate Cancer Outcomes Registry Australia and New Zealand has been approved by the Monash University Human Research Ethics Committee.
Both the NSW and national prostate cancer registries will be carried out in accordance with the ethics approval provided and the National Statement on Ethical Conduct in Human Research (2007) produced by the National Health and Medical Research Council of Australia.
The Prostate Cancer Outcomes Registry Australia and New Zealand publish annual public reports and you can access them here https://prostatecancerregistry.org/publications/annual-reports/.
These reports are available from the year 2016 onwards and are reviewed each year to ensure they best utilise the information captured by the registry.
You can request to access the information collected and stored by the Registry about you in accordance with Australian privacy and NSW privacy laws. Please contact us if you have any questions
Please contact us if this is the case and we'll be able to advise you as to why you have not received a letter from us.
Participation will not cost you anything and you will not receive any payment for your involvement.
