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ResourcesHuman Research EthicsPlease Share – Proto (Anita Slomski September 2016)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Please Share – Proto (Anita Slomski September 2016)


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Troves of data are gathered during clinical trials, but most of it stays locked away. Could freeing it lead to new cures?

When Myra agreed to participate in a clinical trial testing an epilepsy drug, she understood that the medication might not help her and that its side effects could be harmful. But she figured that even if the treatment failed, she would be providing crucial information. The investigators running the trial would use the data they had gathered on her to develop a better drug or figure out why she and others didn’t respond to existing epilepsy therapies. What Myra didn’t know is that the results from her experiment—and those of hundreds of thousands of other people who participate in human clinical trials—are frequently buried, sometimes forever. Without those results, patients don’t benefit. Medical research doesn’t progress.

Data from a medical trial are a crucial resource that can potentially help many more people than the original trial envisions, says Harlan Krumholz, professor of medicine at Yale School of Medicine. “But results from half of clinical trials are not published within three years of the trials’ completion, and many are never published,” Krumholz says. A researcher might sit on that data because an experiment’s hypothesis didn’t pan out, or the new drug or medical device may have failed to work as planned. Negative trial results are difficult to publish in medical journals, and the data from those experiments may never see the light of day.

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