The beginnings of a real, national US prostate cancer registry

For much of the past 6 years, The “New” Prostate Cancer InfoLink has regularly argued in favor of the need for a real, national, US-based registry system designed to collate and track data on the diagnosis, treatment, and outcomes of men with prostate cancer.

We are therefore delighted to see the article by Dr. Matthew Cooperberg that starts on the front page of the March issue of AUA Today. The article describes the projected initiation of the AQUA Registry and its proposed launch in June of this year. We recommend this article particularly to support group leaders and others with an interest in prostate cancer education.

In the long term, the AQUA Registry will, in fact, become a registry that compiles national data on the diagnosis and management of a wide variety of urological conditions. However, it is going to use prostate cancer as its initial, “pilot” disease. Starting with about a dozen urology practices in June this year, it will ramp up to include data from about 100 urology practices by December 2016. And much of that data will be collected directly from the electronic medical records of participating practices and institutions.

We also note Dr. Cooperberg’s emphasis on the fact that the registry will be designed to collect and compile patient-reported outcomes (PRO) data as well as the routine clinical and pathological data historically collected in the medical record. The value of such PRO data over time will be a crucial component of the registry (especially from a patient perspective).

Dr. Cooperberg and his colleagues have been working on the development of a national prostate cancer registry for a while now, so we are very pleased to see that the American Urology Association (AUA) has decided to embrace this initiative. The Devil will very clearly be in the details as this registry evolves over time, and we trust that the registry will be able to include sufficient data of a high enough quality to be able to make some real differences to guidance that can be offered to patients about quality of outcomes and quality of care in the management of prostate cancer (and other conditions too).

We also very much hope that Dr. Cooperberg and his colleagues will find a way to be able to integrate into this database sufficient information on the use of various types of radiation therapy in the management of prostate cancer. A prostate cancer database that does not include strong data representation relevant to radiation therapy in the first- and second-line treatment of prostate cancer (at a minimum) would be far from optimal.

It would be wise not to expect too much too quickly, however. The development of such a national registry system will be complex, and there will be many details that need to get ironed out along the way. What is clear at this point in time is that some very critical, initial steps have been taken and that there is serious backing for the project from within the urology community itself.

2 Responses

  1. Wow, Mike! This would be fabulous! BTW, I was on Boston radio show on Wednesday talking about prostate cancer for 45 minutes from a patient’s perspective and got a plug in for you and this website.=-)

  2. Thank you Jim.

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