New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
Discuss the article on the Forums.

(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

    Messages:
    5,324
    Likes:
    6,735
    Cornwall, UK
    I couldn't find a thread on this, which was in NEJM 22nd January.

     
  2. alex3619

    alex3619 Senior Member

    Messages:
    8,711
    Likes:
    16,261
    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.

See more popular forum discussions.

Share This Page