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I agree with

Give the PACE data to YODA / CSDR etc and let them handle requests and reidentification risk

blogs.bmj.com

Richard Smith: QMUL and King’s college should release data from the PACE trial - The BMJ

Several times when I was the editor of The BMJ the journal was declared the worst medical journal in the world by an ME association. Sometimes we shared the award with [...]More...

7:06 PM · Dec 16, 2015Twitter for Android

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what about just releasing the (de-identified) data as per PLoS requirements? #PACE #mecfs

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yeah, this has confused me. Surely journal conditions should be met?

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didn't say anything about making the data inaccessible to patients. I thought you believed in open access to data?

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Perhaps they're plotting to APPEAR to release the data, but in reality it will be carefully controlled.

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bingo

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absolutely not

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Why not come out and say it? Transparency and accountability aren't for #AllTrials - they're for #AllTrialsButPACE

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AllTrials<AllData😵💤 Data=Study329.org Wow

et al

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There should B NO reidentification risk. All data should have been de-identified LONG AGO.