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PCOR-QLD

Our Research



Eligibility for Participation in PCOR-QLD

All men who have been diagnosed with prostate cancer in Queensland, in a participating hospital, are eligible to participate in PCOR-QLD. Participation is voluntary and participants can opt out at any time. PCOR-QLD must obtain research ethics approval from each participating hospital before they can collect data from that site. To find out if your hospital is participating in PCOR-QLD, please click here .


Information collected

For men who choose to participate in the Registry, PCOR-QLD staff will collect data including name, age, contact details, ethnicity, demographics, and clinical information related to diagnosis and treatment of prostate cancer, as well as the response to a quality of life questionnaire at 12 and 24 months post active treatment.


Consent

Men who have been newly diagnosed with prostate cancer within a participating hospital/clinic, will be given a Participant Brochure by their diagnosing clinician and will be sent a Participant Information Sheet by PCOR-QLD staff, along with a letter of invitation to participate. The Brochure and the Information Sheet describe the study and provide instructions on how to opt-out of PCOR-QLD. By not opting out, men have provided consent for their clinical information to be collected by PCOR-QLD and made available to the binational PCOR-ANZ Registry.

Men can choose to opt-out of PCOR-QLD at any time and their decision to take part or not to take part, or withdraw, will not affect their relationship with their treating hospital or specialist, or incur any out-of-pocket expenses.


Data Security

The PCOR-QLD Registry and the PCOR-ANZ Registry are housed in two locations at Monash University. The Monash Registry Database security is maintained using encryption of data, a managed and audited protocol for access, training and accreditation of personnel, and role-based access and authentication of data.

Monash Registry Databases are housed and managed in an ISO 27001 certified environment. The ISO 27001 certification incorporates the Privacy Act (1988) and Health Records Act (2001) within its Applicability Statement.


Data Access

Access to information collected by PCOR-QLD and PCOR-ANZ is subject to strict protocols and procedures to ensure that privacy, confidentiality and ethical principles are maintained at all times. The provision of aggregate, deidentified data will be subject to an agreed ethics protocol that will be submitted to relevant organisations such as hospitals and cancer registries.