US national prostate cancer registry coming to life soon

At the annual meeting of the American Urological Association (AUA) this morning, Dr. Matt Cooperberg reported that a total of 450 US-based urologists had now signed up to contribute data on their prostate cancer patients to the AQUA Registry.

This is really good news for patients because it will help to accelerate adoption of more consistent and  higher standards of care for all prostate cancer patients in America over time.

Background information on the development of the AQUA Registry is available on the AUA web site. If you scan through this material, you will see that the registry is now due to “go live” in July this year, which we believe is a little ahead of the original schedule. Urologists who are using the Registry and contributing data to it will be able to compare their data on their patients within their own practice to each other and to compare their data to de-identified data from other practices across the country and within regions.

Patients need to understand that ownership of all data will be retained by their own individual physicians and their practices. In other words, no one from another practice will be able to go on line and actually see your personal data from another practice. And all data that gets published in research papers from the accumulated data in the registry will be de-identifed.

As we mentioned about a year ago when work on AQUA was started, the first condition that the AUA decided to test in the AQUA Registry is prostate cancer. Within about another couple of years, The “New” Prostate Cancer InfoLink hopes that any “kinks” will have been sorted out and that it will be possible for urologists to start to really learn where they stand in terms of their practice patterns relative to their peers around the country — in terms of how they treat particular types of prostate cancer patient, the ways they are using differing tests to identify which patients need biopsies and subsequent treatment, etc.

It may take about 4 to 5 years before we are able to see really robust effects from this national prostate cancer registry, but the potential implications over time are considerable, and we congratulate Dr. Cooperberg for bringing this project to life and the AUA for putting the full weight of the organization behind this initiative.

6 Responses

  1. I looked on their website, but couldn’t find how they might be standardizing the measurement and reporting of urinary toxicity and sexual dysfunction. Have you seen any info on that?

  2. Allen:

    They are working on that. Patients will be being asked to complete standard QoL assessment tools over time. Of course one can’t make the patients do that, but Dr. Cooperberg was very specific that the participant practices to date (which include everything from very small single-urologist practices up to some academic centers and some of the LUGPA practices all agreed that being able to assess QoL over time was a key component of the registry system.

  3. Why has this taken so long to develop?

  4. They only started to develop it last year! And until it was possible to use EMRs to merge data sets, the sheer volume of work to build such a registry would have been massive!

  5. This Swedish data base information might be useful. I have had no chance to look at this. I hope this is the correct link.

  6. Dear George:

    The US team working on this project is very aware of this Swedish database (and yes, this is the right link). However, the Swedish database works as well as it does because it is all tied into the database for the entire Swedish national health system — something that doesn’t exist in the USA and so a very different approach is necessary here.

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