FOIs and questions to Imperial College, London re XMRV testing
Update @ 21 February
The following request for information has also been submitted:
To: Imperial College London, Freedom of Information Office
Re: XMRV testing available via ICL Molecular Diagnostics Unit (MDU)
21 February 2010
I would appreciate acknowledgement of this request for information.
A revised notice on the website for the MDU states:
“The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements.
“There has been some confusion around the availability of the XMRV test, for which we apologise. We would like to clarify that it is only available as part of an ethically approved research project. We emphasise that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.”
On 6 February, The ME Association had published a notice on its website stating that it had been informed that an earlier announcement about XMRV testing on the MDU website:
“did not apply to people with ME/CFS, or suspected ME/CFS”
and that the test related only to:
“the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday.”
Although it has since been clarified by ICL that the XMRV testing being made available through the MDU is for researchers only, confusion persists over which diseases/conditions this test is being offered for.
I request the following information under the FOI Act:
1] For what diseases/conditions/study domains is the XMRV test being made available to researchers?
The following requests for information under the Freedom of Information Act have been submitted to Imperial College, London and are published with permission. Information has also been requested direct from the Molecular Diagnostic Unit, Imperial College London. This issue will be updated when requests have been fulfilled.
Submitted by: Kim LeMoon
Date: 08 February 2010
Receipted: 09 February 2010
To: Imperial College London Freedom of Information Officer
Re: Request for information under FOIA in respect of all ongoing research projects or scheduled research projects relating to XMRV (Xenotropic murine leukemia virus-related virus) detection via blood samples, tissue samples or any other methods of detection
I should be pleased if receipt of this request for information could be acknowledged, together with the date by which a response will be provided.
I request the following information under the Act:
1] Any Identification or Reference code assigned to Project
2] Project’s Public Title; Project’s Scientific Title
3] Study hypothesis/rationale (where applicable)
4] Ethics approval and any reference numbers attached to this approval
5] Study design
6] Countries of recruitment; Centres of recruitment; Other methods of recruitment
* Through what means will prospective participants be recruited?
7] For what diseases/conditions/study domains are patient samples to be collected?
* Through what means will control samples be assembled?
8] Participants – inclusion criteria
9] Participants – exclusion criteria
10] Target number of participants
11] Patient information material: please provide copies of any patient information material
12] Anticipated start date
13] Anticipated project completion date
14] Sources of funding
15] Sponsor details
Re: Addendum To Previous Request for information under FOIA in respect of all ongoing research projects or scheduled research projects relating to XMRV (Xenotropic murine leukemia virus-related virus) detection via blood samples, tissue samples or any other methods of detection
I should be pleased if this addendum is processed together with my first request that was sent earlier today 8 Feb 2010.
Please acknowledge receipt of both requests along with a Reference Number, and the date by which a response will be provided.
In addition to the earlier request that was made today, I request the following information under the Act:
1] Principal Investigator(s):
2] Names of Project Collaborator(s):
3] Names of Collaborating Institution(s):
From 27 Jan 2010 until 8 Feb 2010, XMRV Detection Testing was offered for £200 by the Molecular Diagnostic Unit via the Imperial College London website. On 8 Feb 2010, the information was removed from the website and replaced with this notification:
We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.
Please provide answers to the following questions:
4] Why was the Molecular Diagnostic Unit charging £200 if the XMRV Diagnostic Testing is to be carried out as part of an ethically approved research study?
5] Why was the XMRV Diagnosic Test being advertised to referring medical practitioners (GPs or hospital doctors) if the testing is being carried out as part of an ethically approved research study?
6] If the XMVR Diagnostic Test was not being offered for people who are concerned that they might have CFS, or who have been diagnosed with CFS, what patient population was the test intended for?
Submitted by: Richard Dagg
Date: 09 February 2010
Receipted: 10 February 2010
To: Imperial College London
Freedom of Information Officer
Re: Request for information under FOIA in respect of Molecular Diagnostic Unit XMRV Test
Please acknowledge receipt of this request along with a Reference Number, and the date by which a response will be provided.
From 27 Jan 2010 until 8 Feb 2010, XMRV Detection Testing was offered for £200 by the Molecular Diagnostic Unit via the Imperial College London website.
Please provide information regarding the exact testing methods employed in the test offered including, but not limited to the following:
1) blood sample volumes and processing
2) does the test use a molecular plasmid control in water or a positive blood sample
3) primer sequences and amplification protocol used
From Stephen Ralph via Co-Cure
09 February 10
[CO-CURE] ACT: Questions for Dr Steve Kaye and Professor Simon Wessely at Imperial College
It was recently announced that the test offered on the Imperial College website for XMRV in relation to CFS/ME and prostate cancer was now being withdrawn with immediate effect.
Imperial’s excuse for withdrawing the XMRV test from their website for “CFS/ME” and prostate cancer was because it wasn’t meant for patients and that it was only meant for “an ethically approved research project.”
Well, if this was the case then where does that leave all the other tests it offers on its website?
STI’s for £40 (each),
HCV genotyping for £100,
HBV for Genotypic Drug Resistance costing £100,
HTLV (costs covered by the NHS) and
HIV-1 (costs covered by the NHS)
Question 1 – Was this test that Imperial was offering (on the same basis as all the other test above) the same test used for the recent Imperial/PLoS One study?
Question 2 – Was the test different and if so – how was it different?
Question 3 – As all the other tests (shown above) are still available under the same framework then regardless of whether or not such tests are only available via requests from GP’s or Specialists – opposed to being offered direct to patients; why was the XMRV test removed?
Question 4 – If the answer to Question 2 was “No” and it wasn’t different then where does this leave the credibility of the PLoS One/Imperial study?
Question 5 – Was the Imperial test removed from the website because it was inherently unreliable? (Go back to Question 4)
Readers wanting answers to these question need to contact Dr Steve Kaye who was cited on the Imperial website as being the contact for the XMRV test (now withdrawn)..
Tel: 020 759 43917 (direct)
FAO Dr Steve Kaye
Molecular Diagnostic Unit,
Imperial College London
4th Floor, Medical School Building
St. Mary’s Hospital
London W2 1PG
I have asked Dr Kaye these questions and so far I have not received a reply.