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(Ivanhoe Newswire) -- New guidelines make it easier for researchers to inform study participants of the results of their studies, notifying them about possible dangers and benefits.
Its estimated 2.3 million people in the United States take part in clinical trials each year, helping researchers discover new treatments and keep unsuccessful ones off the market. But there is no formal requirement for researchers to inform study participants of results, which can cause patients frustration and confusion. They sometimes even miss information that could be important to their health.
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Individuals who volunteer to participate in clinical research frequently expose themselves to risks, both known and unknown, Ray Dorsey, M.D., a neurologist at the University of Rochester Medical Center and the reports author, was quoted as saying. Because of their participation, they should be informed of the results of these studies in a timely and personalized manner.
Following a study of a drug to treat Huntingtons disease, researchers utilized a new communication plan to inform participants of the study results. First, information on the results was posted to the studys website, then emailed to members of the Huntingtons disease community. Participants also received personal phone calls from study coordinators within 48 hours of the initial public release of results. A conference call was also made available to all study participants, during which investigators summarized results, and fielded questions from listeners.
The method received high levels of satisfaction from study participants and reached more than half of the participants within 48 hours of the public release.
SOURCE: Archives of Neurology, 2008
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