International prostate cancer registry initiated in Australasia


According to a newly published article in BJU International, a new prostate cancer registry (Prostate Cancer Outcomes Registry — Australia and New Zealand or PCOR-ANZ) has been established to monitor outcomes of prostate cancer treatment and care “in a cost-effective manner”.

We assume that this new registry has been developed based on learnings from the registry set up some time ago in the State of Victoria, Australia.

Apparently eight out of nine potential “participating jurisdictions” have agreed to contribute data to this registry. (We assume that the term “jurisdictions” refers to the seven Australian states and the South and North Islands in New Zealand.) The abstract of the paper by Evans et al. doesn’t tell us which “jurisdiction” has still to decide to participate. The registry appears to be being coordinated from Monash University in Victoria, Australia.

PCOR-ANZ has defined a minimum data set for collection, to enable analysis of key quality indicators that will aid in assessing clinical practice and patient focused outcomes. We further assume that this minimum data set can be found in the full text of the paper by Evans and her colleagues.

Other key elements of the registry appear to include the following:

  • Local governance, site recruitment, data collection, and data transfer into the PCOR-ANZ within each jurisdiction
  • Patient registration based on an “opt-out” model, implying that individual patient data will be included in the registry unless patients actively “opt out”
  • Initial patient contact only after notification of the diagnosis of prostate cancer through a hospital or pathology report, or from an existing cancer registry
  • In addition to the standardized minimum data set, information on demographics, diagnosis, treatment, outcomes, and patient-reported quality of life, are to be collected
  • Data security based on adherence to ISO 27001 standards

Detailed information about what this will mean for individual patients in Australia and New Zealand can be found here on the Monash University web site. Personal identifying information about individual patients will never be released by the registry.

The “New” Prostate Cancer InfoLink is pleased to see the development of this type of registry on a national/international basis. We would very much like to see such a registry being developed here in the USA, where we believe it could have great value in helping to improve overall standards of care and the collection of outcomes data on new and evolving forms of treatment compared to current standards of care. However, we are less than sanguine about whether US-based authorities and the relevant medical communities would be willing to go down this road.

 

5 Responses

  1. I share your concern, although I might used the term “dare” instead of “willing”.

    “helping to improve overall standards of care and the collection of outcomes data on new and evolving forms of treatment compared to current standards of care.”

    Some would call this “government control”, “socialized medicine”, the O word, or such.

  2. Dear Mike:

    Collecting data does not imply socialism or control of any type. What people do with those data may well imply government control (or even socialized medicine) … but then at present our insurance industry collects all these data privately and most certainly exerts commercial control!

  3. Question for Sitemaster or Buddies from Australia/New Zealand

    Of course this is a welcome development. There seems to be quite a bit of prostate cancer research emanating from Australia, and this register will foster that research.

    My question is whether prostate cancer in these countries resembles the patterns of greater prevalence and elevated seriousness seen in Northern European countries. Australia and New Zealand are roughly as far from the equator as the northern countries, and prostate cancer in the northern hemisphere seems to become increasingly prevalent and perhaps serious the further the population is from the equator, at least that is my impression. Vitamin D deficiency has been advanced as one possible contributor to this phenomenon.

  4. Dear Jim:

    I don’t think you can compare the sunshine levels in northern Europe (low) to those in even southern Australia (e.g., Melbourne), which like California is one of the world’s great wine making areas. Australia also has one of the world’s highest risks for melanoma! Vitamin D levels in Australia are probably much less of a problem than even those in somewhere like Pennsylvania!

  5. Thanks.

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