New National Proactive Surveillance Network close to “going live”

In May last year (i.e., May 2010), the Prostate Cancer Foundation announced a partnership with Johns Hopkins and Cedars-Sinai to set up a national, proactive prostate cancer surveillance initiative. We reported this announcement … and then we heard no more.

However, according to an Associated Press article about active surveillance in The Boston Globe today, a Prostate Cancer Foundation sponsored National Proactive Surveillance Network (NPSN) web site is now up and running. It is currently limited to offering educational information about active surveillance to newly diagnosed patients, but “Within a few months, an interactive section of the site will be added to link men with doctors who offer active surveillance and track how they fare with input straight from the patients themselves,” according to Dr. H. Ballentine Carter of Johns Hopkins.

In addition to the rapidly growing emphasis on active surveillance as an apporopriate management option for men with low- and very low-risk prostate cancer, it is also notable that the research community is starting to focus its attention on how often (and how many) men are actually offered active surceillance as an appropriate management option, and the issues of whether they can stay on active surveillance over time.

In conjunction with a researcher from Georgetown University in Washington, DC, Kaiser Permanente will be enrolling 1,500 newly diagnosed, low-risk prostate cancer patients northern California into a study to investigate how many of these men are told about active surveillance and what helped or hindered their decision to consider active surveillance as a management option. Those who go onto active surveillance will be carefully tracked over time to explore whether they stay on the protocol or decide to opt out after a period of time and have some form of active treatment, and if so why. According to the Georgegtown-based researcher, Kathryn Taylor, “Living with untreated cancer is very difficult and not everybody can do it.”

A note on the web site of the NPSN carefully states that:

While many men benefit from sharing their experiences with others battling prostate cancer, such interactions within the context of this research program could skew the data collected. Therefore, we have not included any networking or social media components within the myConnect patient portal.

If you would like to connect with other prostate cancer patients, you may want to try one of the many online networking sites designed specifically for this purpose.

The “New” Prostate Cancer InfoLink already has a group within its social network where men considering or on active surveillance can meet to discuss issues and questions around the use of this form of disease management. Participants in the NPSN initiative are wecome to join our social network and share information through this group.

One Response

  1. Two years later and there’s not much to report, apparently. It is said that the site should be fully functional “soon.”

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