1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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(US) Open Data - public views sought

Discussion in 'Other Health News and Research' started by MeSci, Feb 7, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Cornwall, UK
    I couldn't find a thread on this, which was in NEJM 22nd January.

  2. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    If medical research is to be improved then open data is necessary. The debate is really about how to do this. I think that researchers should indeed have exclusive right to data for a period of time, but the debate is really on how long that should be. Immediate release might be too soon, several years later is definitely too late.

    If the PACE trial had public data release after one year, then we would now have possibly disproven their findings. So I wonder how much that kind of research will agree with open data? I also wonder what they mean by open data. Its not a drug trial, they might argue that for some reason they should be exempt. They might also have half-way open data, in which the public has no access but only certain groups.
    Valentijn likes this.

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