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    Open-Data Momentum Builds; Trialist Resistance May Be Futile

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    graham64
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    Open-Data Momentum Builds; Trialist Resistance May Be Futile

    Post by graham64 on Fri Apr 21 2017, 22:38

    Background

    In early April, the New England Journal of Medicine (NEJM) held a 1.5-day event in Boston called "Aligning Incentives for Sharing Clinical Trial Data" which was broadcast on the Web. Panels featured clinical trialists, data analysts, and patient participants—the three groups with interests in data—as well as government and funding agencies. To explore the potential benefits of data sharing ahead of the event, NEJM launched the SPRINT Data Analysis Challenge. The National Institutes of Health (NIH)- sponsored SPRINT trial compared intensive (≤120 mm Hg) versus standard blood pressure control in hypertensive patients at high cardiovascular risk. Challenge entrants were invited to analyze the dataset underlying the main publication and identify a novel finding that advances medical science. The three winners presented on day one of the webinar.
    Watching the data summit online and following the Twittersphere (#NEJMDataSummit storified), data analysts and trial participants came across as open-data evangelicals, while clinical trialists who expressed concerns about misuse of data and lost career opportunities seemed like the "get off my lawn" old guard. Most trialists were not against the concept of data sharing but wanted an extended period of exclusive access and gatekeepers to control who got access as opposed to a more liberal free-for-all.

    Medscape asked some attendees for feedback. Open-data proponent Atul Butte, MD, PhD (UCSF) emailed that he was optimistic and "saw a lot of change in attitudes during the summit." However, research-participant representative Sharon Terry (CEO, Genetic Alliance), who has two children with a rare disease, was "not surprised by the paternalistic, protectionist, conservative stance of the trialists" and "did not sense any transformation in their thinking."

    More here http://www.medscape.com/viewarticle/878670


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    chris c
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    Re: Open-Data Momentum Builds; Trialist Resistance May Be Futile

    Post by chris c on Fri Apr 21 2017, 23:41

    Hehe, Lord God Sir Professor Rory Collins came across just like T Colon Campbell after Denise Minger dissected his China Study magnum opus.
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    graham64
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    Re: Open-Data Momentum Builds; Trialist Resistance May Be Futile

    Post by graham64 on Sat Apr 22 2017, 23:41

    chris c wrote:Hehe, Lord God Sir Professor Rory Collins came across just like T Colon Campbell after Denise Minger dissected his China Study magnum opus.

    Very much doubt Sir Rory Statin will come clean with the data from his studies see MK's take on him

    https://drmalcolmkendrick.org/2015/02/16/a-humiliating-climb-down-or-a-machiavellian-move/


    _________________
    I'm a skinny T2 diagnosed 4/4/2008, a high calorie LCHF diet and one metformin a day A1c 6.2 and no complications.

    Proving the LowCarb sceptics wrong for over nine years,

    Not all cherubs are Angels  Wink nor all diabetics Bonkers  Rolling Eyes

      Current date/time is Wed Sep 20 2017, 21:10