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Survey confirms that small number of U.S. adults, children participate in research studies

In a 2011 cover story for Stanford Medicine magazine, my colleague Krista Conger outlined one of the big hurdles in getting new cancer treatments to patients: the clinical-trial process. And, more specifically, the dearth of people enrolled in trials. “We’re going to have to get around the problem that less than 5 percent of adult cancer patients who could be participating in clinical trials are enrolled in one,” Phil Lavori, PhD, chair of the Department of Health Research and Policy, is quoted as saying. “The rate of participation is abysmal.”

I was reminded of this late last week when coming across findings of a new study from the University of Michigan. Researchers there conducted a survey and found that only 11 percent of adults and 5 percent of children had ever participated in medical research (not just cancer-related). In addition, as outlined in a release, only “64 [percent] of adults said they were aware of opportunities to participate in medical research, while only 12 [percent] of parents said they were aware of opportunities for their children to participate.”

In a bit of good news, the researchers did find a significantly greater level of awareness about trials from survey respondents living within 100 miles of four specific Clinical and Translational Science Awards locations. (CTSAs, like Stanford’s Spectrum, are NIH-funded programs designed to improve clinical and translational research.) As the researchers point out in their paper, these higher levels of awareness “merit investigation” to identify what these programs are doing right, and how their approaches might be used elsewhere.

Previously: Advice for caregivers and patients about clinical trials, Patients share clinical trial experiences at Stanford and Clinical trials: My next good chance

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