Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Unreported Clinical Trials

Discussion in 'Other Health News and Research' started by Never Give Up, Feb 18, 2016.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.


    "Most clinical trials conducted by researchers at U.S. academic medical centers, finishing from 2007 to 2010, did not report or publish results within 2 years of completion, researchers reported."

    "...36% reported or published results within 24 months of study completion (range 16% to 55% for individual centers), and 34% did not report or publish results at all in the following years"

    "Krumholz said his team thought they would find the institutions that were doing well and then disseminate identifiable best practices.

    "But we were surprised to find that no one is doing well," he added. "The fact that it's so pervasive suggests it's not about bad individuals, it's about a culture that allows for reporting to be discretionary rather than mandatory."

    "This is a human subjects' violation," Krumholz explained. "People have agreed to be part of our studies and we routinely don't report [results]. All studies should be completed and reported, but these in particular, are human studies. These aren't studies that have fallen off the tracks. These are studies that were successfully completed. This should alarm everyone."

    "According to Krumholz, the impact of this lack of data reporting means only a biased slice of research information has been influencing medicine and future research.

    "We talked to a lot of people about it and we failed to find any single problem," Krumholz said."Some people [weren't] excited about the results, others got busy or distracted, many were small and maybe they use the [data] to inform their next research project."

    Krumholz told MedPage Today that some researchers stated "Maybe the study was so bad we shouldn't report the results," implying that they avoided sharing or publishing results because of potential embarrassment.

    But he stressed that if participants consented, and experiments were conducted, then the data "need to see the light of day... if it's good enough to be consented, it's good enough to share the results."

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