Kati
Patient in training
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http://www.wsj.com/articles/public-release-of-cfs-data-is-limited-by-privacy-rules-1458846440
Public Release of CFS Data Is Limited by Privacy Rules
The main reason we have been unable to release data to members of the public is that we don’t have the consent of the trial participants.
March 24, 2016 3:07 p.m. ET
0 COMMENTS
I am writing on behalf of the principal investigators of the PACE trial of treatments for chronic fatigue syndrome, which was first published in 2011 and was the subject of “Patients, Scientists Fight Over Research-Data Access” (Personal Journal, March 8). The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients. Although data can be anonymized, this doesn’t override the need for consent and protection of the data. We have shared data from the trial with other researchers, with proper safeguards of the data mutually agreed.
We have treated patients with CFS for more than 20 years. Many have improved with cognitive-behavioral and graded-exercise therapies. While these therapies don’t help everyone, they are the best available, with more evidence supporting their use than for any other treatment.
Peter White
Queen Mary University of London
Public Release of CFS Data Is Limited by Privacy Rules
The main reason we have been unable to release data to members of the public is that we don’t have the consent of the trial participants.
March 24, 2016 3:07 p.m. ET
0 COMMENTS
I am writing on behalf of the principal investigators of the PACE trial of treatments for chronic fatigue syndrome, which was first published in 2011 and was the subject of “Patients, Scientists Fight Over Research-Data Access” (Personal Journal, March 8). The main reason that my colleagues and I have been unable to release data to members of the public who ask for it is that we don’t have the consent of the trial participants to release their data in this way, and we are ethically bound to act in the best interest of our patients. Although data can be anonymized, this doesn’t override the need for consent and protection of the data. We have shared data from the trial with other researchers, with proper safeguards of the data mutually agreed.
We have treated patients with CFS for more than 20 years. Many have improved with cognitive-behavioral and graded-exercise therapies. While these therapies don’t help everyone, they are the best available, with more evidence supporting their use than for any other treatment.
Peter White
Queen Mary University of London