A.B.
Senior Member
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I am writing with regard to the protocol Exercise therapy for chronic fatigue syndrome (individual patient data) DOI: 10.1002/14651858.CD011040
I understand that the actual review will soon be published. I am writing to request the data so that I can reproduce basic analyses and perform sensitivity analyses with respect to the outcomes that were originally specified for the trials included in the protocols, but later switched.
It may seem premature for this request, but note that release of only a portion of the data for one of the trials, The Lancet PACE trial took five years after a request.
Similarly, I requested data from that trial that were promised to be available as a condition for publishing in PLOS One. Over 18 months later, I am still waiting.
I sincerely hope that you will simply make the data available. However, my request for the PLOS One PACE data was turned into a FOIA request by the investigators and rejected. In anticipation that might be the case for the Cochrane Review, I thought we could start early in the request-rejection-appeal process.
I write in hope that my reasonable request can be accommodated without instigating such a drawn-out process.
I look forward to hearing from you.
Thanks in advance.
JC Coyne
https://jcoynester.wordpress.com/20...questing-the-data-set-from-a-cochrane-review/
I think this is a very important step. Cochrane is highly respected and this review will give considerable credibility to CBT/GET. Coyne is probably in the best position to fight this out with Cochrane. Please let him know that you appreciate his efforts.
Coyne is planning to carefully analyze the data and publish the analysis:
On behalf of these stakeholders, I am formally requesting release of the individual participant level data from the systematic review and meta-analysis for independent reanalysis. My reanalyses will be forensic, and will include exploratory sensitivity analyses using the scoring of measures originally specified in original trial protocols. I of course will make the results of these analyses available for public scrutiny in the from of a preprint, solicit comments, and then submit the revised paper for peer review.
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