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The Lancet advocates new data sharing rules


Senior Member
No, really:
Editors from leading medical journals proposed expansive new data-sharing requirements Wednesday for authors writing about clinical experiments. The proposal, announced in an editorial jointly published by 14 journals in several nations, said researchers conducting human tests had “an ethical obligation” to trial subjects to report their data. It proposes that any authors wishing to publish in those journals must make detailed data available to other researchers on request.



ME/CFS since 1995; activity level 6?
Cornwall, UK
and here it is in the NEJM.
This is the related piece in Physician's First Watch:
A New Era in Transparency in Clinical Trial Data
By Harlan M. Krumholz, MD, SM

Dr. Krumholz is editor-in-chief of NEJM Journal Watch Cardiology, from which this story was adapted.

The International Committee of Medical Journal Editors (ICMJE) has proposed a requirement to share data that could transform clinical research and speed scientific discoveries.

In an editorial in the New England Journal of Medicine, the committee proposes requiring authors of clinical trial reports to share deidentified individual-patient-level data that underlie the article's results, as well as the associated metadata, within 6 months of publication. The committee also proposes that trialists document their data-sharing intentions at the time that they register the trial.

In an instant, these editors have now set sharing as a normative expectation in the course of performing experiments with human beings. This unexpected and very welcome turn of events holds the promise of enhancing transparency, elevating science, and generating much new knowledge. Readers are encouraged to make their comments known to the ICMJE by April 18 at the link below.

NEJM editorial (Free) http://response.jwatch.org/t?ctl=541D:5FF9B588B7CB016CD38345DE3B7A1FE9&
ICMJE website, where readers can comment on the proposal (Free) http://response.jwatch.org/t?ctl=541E:5FF9B588B7CB016CD38345DE3B7A1FE9&
Background: Physician's First Watch coverage of transparency in clinical trials (Free) http://response.jwatch.org/t?ctl=541F:5FF9B588B7CB016CD38345DE3B7A1FE9&


Rebel without a biscuit
I skimmed the link worldbackwards shared. I personally don't see anything unusual in this.

They are responding to the issue using some other examples that are reasonable to consider and while we find it hypocritical I think that the issue can be easily spun to mean that they hope that by making clear their position things will improve for future trials. The past being all in the past.

I also think that in future the BPS CBT/GET advocates might do only what's absolutely necessary to respond in defense of PACE and use tactics of going on the offensive more so that we are put in a position of defending how patients and advocates see things.

I would not be surprised if even when biomarkers are found that they have already a response that suggests we have influenced our biology in some way with our mind and a disturbed mental state-- remember body and mind are one for them (in some flaky new age way that doesn't require science). We already see this with using CSS as the biological gateway explanation. They can keep this up.

I forget who to attribute to this paraphrased quote (Feynman maybe) but: Science moves forward when the status quo scientists die out.
We need to keep pushing for that new generation of scientists. Like so many ordinary casually malevolent people they (BPS) won't necessarily see justice for the harm they have committed.

That's not to say that things won't improve for us before then and that real treatment options won't be available in a limited way.