Request for raw data from the PACE Trial
Dear Medical Research Council,
"Comparison of adaptive pacing therapy, cognitive behaviour
therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial"
I would like access to the full raw data from the PACE Trial.
I particularly require the data relating to the changes measured for each individual participant (i.e. not just the average measurements), at baseline and at 52 weeks for the primary outcomes for each of the measured groups in the Trial (The SMC, GET, CBT and APT groups.)
The same measurements for the secondary outcomes is also required.
I also require the data relating to the changes measured for individual participants, and the average changes, in each subgroup in the study (i.e. subgroups under each of the different diagnostic criteria.)
Dear Mr Courtney,
Thank you for your FOI request.
We are looking into whether the Medical Research Council hold any
information that is relevant to your request.
We will respond to your request in due course.
Senior Information Officer
Dear Mr Courtney,
Thank you for your Freedom of Information request of 25th May 2011 where you
ask for full raw data from the PACE trial. In your request you go on to
refer to a research paper recently published in the Lancet (Volume 377,
Issue 9768, Pages 823 - 836) and to ask for data relating to specific
The PACE trial (A Randomised Controlled Trial of CBT, graded exercise,
adaptive pacing and usual medical care for the chronic fatigue syndrome) was
funded by the Medical Research Council through a grant to Barts and The
London School of Medicine and Dentistry, Queen Mary, University of London.
Data relating to MRC-funded studies would normally be owned and managed by
the host institution and I can confirm that the MRC does not hold the
As with all MRC-funded trials of this scale the MRC was represented on the
Trial Steering Committee, in addition MRC scientists have also collaborated
on aspects of the research and are named as co-authors in the paper you
refer to. In neither of these additional capacities did the MRC hold 'full
All requests for access to data relating to the trial should be referred to
the principal investigator and/or to the Records and Information Compliance
Manager at Queen Mary, University of London
I hope that your are satisfied that your request has been dealt with
appropriately, if not you may appeal using the MRC's complaints procedure.
Details are on the MRC website at:
may contact the MRC Complaints Officer by email at
[email address] or write to The Complaints Officer,
Medical Research Council, 20 Park Crescent, London W1B 1AL. If, following
the Complaints Officer's reply, you remain dissatisfied; you may contact the
Information Commissioner. Details of how to take your complaint further are
Corporate Information and Policy
Medical Research Council