Despite the fact that 2.3 million people volunteer for clinical trials each year in the U.S., there are no rules for how companies should inform subjects of the outcomes of their trials. In fact, many participants never even find out if they were receiving the test drug or a placebo. So researchers from the University of Rochester Medical Center surveyed 114 trial participants to learn how they would prefer to find out about clinical trial outcomes.
The researchers reached out to patients who had recently participated in a trial for Huntington's disease. "They sent out a news release immediately after one was sent by the drug company that sponsored the trial. Then, staff members from the study sites called each participant. Finally, scientists held a conference call for participants and their caregivers two weeks after the results were released," explains USA Today. They found that 9 out of ten participants were satisfied with the phone call, 8 out of ten with the conference call, but about 5 out of ten were dissatisfied learning the outcome through a press release.
Those who enroll in trials do so at their own risk, knowing that they could benefit from a new treatment or be harmed by an experimental drug. The authors conclude that companies should make a greater effort to communicate the results of trials to those who willingly accept this risk. "Individuals who volunteer to participate in clinical research frequently expose themselves to risks, both known and unknown," said the study's lead author Dr. Ray Dorsey. "Because of their participation, they should be informed of the results of these studies in a timely and personalized manner."