GENERAL INFORMATION FOR PATIENTS

 

eligibility

For men to participate in the Prostate Cancer Outcomes Registry – Australia & New Zealand (PCOR-ANZ) they must:

  • Be aged 18 years or over;
  • Have a current or previous diagnosis of prostate cancer; and
  • Have been diagnosed or treated for prostate cancer in a participating hospital.

To find out if your hospital is participating in PCOR-ANZ , please visit the Participating Sites tab.

participation and consent

If you have recently been diagnosed with prostate cancer, your hospital will send a notification of your diagnosis to your state Cancer Registry. If your hospital (or doctor) is participating in PCOR-ANZ, you will receive an information sheet about PCOR-ANZ, along with a letter of invitation to participate.

If provide consent to participate in PCOR-ANZ, your personal and medical details will be collected and entered into PCOR-ANZ. Participation is voluntary and you can leave the registry at any time (see “Opting Off the Registry” section below) without affecting the treatment or care provided to you.

information collected

The following information about you will be collected:

  • Name and date of birth
  • Address, living status and contact details
  • Diagnosis and treatment details
  • Details of your current health status (quality of life collected via the EPIC 26 questionnaire at 12 and 24 months post last active treatment).

The information and details collected about you for PCOR-ANZ  will never be released and only used for research purposes.

OPTING OFF THE REGISTRY

It is important to note that your details will automatically be included in the registry unless you let us know that you do not want to participate. Participation is entirely voluntary and you can choose to opt-out of  PCOR-ANZ at any time, without incurring any out-of-pocket expenses, or affecting the level of treatment or care you are provided with.

To opt out of participating in PCOR-ANZ, please contact us at 1800 771 410 in Australia or +64 3 355 2426 in New Zealand. You may also email us at pcor@monash.edu.

If you are willing to allow your data to be included in PCOR-ANZ you are not required to do anything. Should you decide to take part but later change your mind, you are free to withdraw at any time.

The links below may help to provide advice and guidance to men (PCOR-ANZ does not endorse the content provided within them and would advise men to speak to their general practitioner or specialist about any health issues they may have).

PATIENT EXPERIENCES

Patient Experience 1

Patient Experience May 9, 2016

COMING SOON!   We would love to hear from you! Please submit your story below.

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Patient Experience 2

Patient Experience May 9, 2016

COMING SOON! We would love to hear from you! Please submit your story below.

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Patient Experience 3

Patient Experience May 9, 2016

COMING SOON! We would love to hear from you! Please submit your story below.

Read More

SHARE YOUR EXPERIENCE

We hope you enjoy, and feel inspired, reading the shared stories from our community. We welcome you and/or your family members to share your personal experience with prostate cancer with us.

Please submit through the form below. With your permission, we will select a few stories to share on our website and reports. Please inform us if you like your name to remain anonymous.

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