Request for raw data from the PACE Trial

Mr Courtney made this Freedom of Information request to Medical Research Council

Medical Research Council did not have the information requested.

From: Mr Courtney

15 May 2011

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.)

Yours faithfully,

Mr Courtney

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From: foi
Medical Research Council

16 May 2011

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.

Yours Sincerely,

Tiffany Lay

Senior Information Officer

[1]www.mrc.ac.uk

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From: foi
Medical Research Council

9 June 2011

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
measurements.

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
information requested.

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
raw data'.

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
(email:[email address]).

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:
www.mrc.ac.uk/index/about/about-contact/.... You
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
at www.informationcommissioner.gov.uk.

Yours sincerely,

Rosa Parker

Corporate Information and Policy
Medical Research Council
www.mrc.ac.uk

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Mr Courtney left an annotation ( 9 June 2011)

Quote-marks New FOI request made to Queen Mary, University of London:

http://www.whatdotheyknow.com/request/re...

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