Trial recruitment sites must avoid false hopes

Indiana is taking the offensive in attracting clinical trial volunteers. The state's Clinical and Translational Sciences Institute, a collaboration between Indiana University, Purdue University and the University of Notre Dame, has built a website to connect medical researchers with potential subjects.

Via the site, INresearch.org, registrants create a health profile that helps investigators find matches for their trials. In an announcement promoting the site, organizers quote a multiple myeloma patient who's participated in two trials. He says he feels like part of the advancement of medical science, noting that his treatment has "effectively prevented his conditions from worsening over the past decade."

But social media outreach, like all volunteer-finding efforts, must walk a fine line between trial recruitment and feeding an unrealistic optimism in those who are sick. The website homepage on Friday showed two quotes from volunteers. A segment from one says, "Although not cured, my quality of life for the nearly four years since diagnosis has been excellent." A segment from the other says, "Research studies...offer the potential for improved treatment to the individual clinical trial participant."

A recent New York Times column notes that even well-informed patients are sometimes unrealistic about the benefits of trial participation. The column cites a study of volunteers in early-phase cancer trials. Most understood the scientific-advancement aim of the trial, but they were unrealistically optimistic about what the trials might do for them. They believed they would receive greater benefit than other volunteers.

This type of optimism differs from a generally optimistic disposition that's natural to some people, the column says. The bottom line is that patients often participate in early-phase trials because they believe they will benefit.

- here's the INresearch.org release
- see the NYT column

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