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ACOR website in transition?

04/13/2013

 

The nonprofit Association of Cancer Online Resources (www.acor.org) disease related email lists are apparently being abandoned in favor of a new for-profit business model that may sell data collected from patient subscribers to the pharmaceutical industry and others.  An apparent successor company’s website is located at www.smartpatients.org.

According to an email distributed early today by ACOR email list mangers, the new enterprise, “Smart Patients is a for-profit company so we can invest what’s needed to create a world-class system for patients that will be sustainable in the long term. The business model is transparent: Occasionally we run surveys or projects you can choose to take part in or not; and also we summarize useful, anonymous information that entities like biotech and pharma companies can use to better understand patients and accelerate drug development.”

We attempted to post an inquiry to one of the ACOR email lists to learn about the new firm's patient privacy policy, if any, because this was not disclosed on the home page of the Smart Patients website at the time of our visit today.  We were unable to reach the ACOR website because it appears to have been offline at the time we attempted to reach it.  It is not known if previously collected patient information stored in ACOR’s archives will also be sold to corporate interests.

The email sent to ACOR members adds that the Smart Patients website membership is limited to “invitation-only” and admonishes users, “…best not to discuss it elsewhere just yet.”

According to non-profit watchdog GuideStar.org, ACOR’s tax-exempt nonprofit status was revoked by the U.S. Internal Revenue Service for its failure to file tax returns, as required by law, for three consecutive years or more.

The ACOR home page as it appears in the Internet Archive on March 31, 2013: http://web.archive.org/web/20130331124750/http://acor.org/

[Ed. note: The evening of April 15, 2013, the ACOR website appeared to be back online, with some users reporting difficulty in using the listserv over the weekend.]

NeonCRM by Neon One