Discussion in 'XMRV Testing, Treatment and Transmission' started by Kati, Feb 4, 2010.
Here's the ICL FOI page.
Who's up to taking this on?
Is anyone up for putting in an FOI? It does not have to be from within the UK.
I'd do it, but the DSM-V draft is scheduled for publication Wednesday and there's stuff I need to do before that and other stuff.
Is that an Egon Schiele, Kim?
Okay Suzy. I thought it had to be someone from UK. In that case, I'll get working on it. I've never done this before - can I run it by you before I send it off?
ETA: yes, that's Schiele
Here's an FOI from last year
A blank example from an FOI from last year:
To: Records Manager, FOI, and Data Protection Officer: XXXXXXXXXXXXXX
Re: Request for information under FOIA in respect of XXXXXX
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
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] Date by which Project is anticipated to complete
14] Sources of funding
15] Sponsor details
Suzy, what do I fill in for this:
OK OK OK
(it won't accept only two characters)
All ongoing research projects or scheduled research projects relating to XMRV detection via blood samples or via any other methods of detection.
(which leaves it non specific to either prostate or CFS or to blood)
You don't want to tie yourself down to any specific patient population or detection method.
Kim I wish I could help. If you get an outline of what you need to request I'll try. PM me or we could talk it out in the "pub".
Ill stay logged in to chat and listen out for a welcome.
Just one point.
Unless different information is being requested there is no advantage to having multiple submissions made under FOI for the same information.
Also, requests under FOI are handled by individuals in an FOI and Data Protection Office with no interest in, or specific knowledge of the issues surrounding requests for information; either the information is held, or it is not; either the information can be provided or is subject to one or more exemptions.
If the information is denied the Office should cite the reasons and the specific clauses of the Act which apply.
There is no point in adding any other material, opinion or whatever, since these requests are straightforward requests for information held by an institution and not a vehicle for advocacy.
I would also ask why a charge of 200 was being made for the test if the testing is being carried out as part of a research study.
Also why the test was being advertised to referring doctors and hospitals on the website if the testing is being carried out as part of a research study.
My example above related to a PhD project.
You'll also want the Principal Investigator(s) names and project collaborators names and institutions.
I emailed IC with a request for information. Done.
ETA: Dang, I didn't see your last 2 posts and didn't include those questions. Can I send an addendum to the request?
Yes, you can.
Ask for it to be processed with the first request.
Ask for both to be receipted and ask for a Reference number (they don't all give one) and they won't all receipt unless you ask them if you have not already done so.
When they receipt, they should also tell you the date by which you should expect a response (on or before 20 working days).
Well done. I really did not want to have to do one today.
Imperial College offering an XMRV test - for a bug they don't believe is present - would be funny if it wasn't so weird. I can't believe they're doing this. Maybe they retained Dr. Reeves as an advisor - and he immediately gave them the kind of shoot yourself in the foot moment he's so good at.
So much for the IC offering testing for XMRV. They are withdrawing it from public availability.
Kim and Suzy,
You guys are the best.
If it's not too late, can you ask for specifics regarding any changes to their testing method?
I really want to know if they are going with the exact same method or if it's changed.
If my experience in medical politics is anything to go by---There is a strategy here!
So, now they have taken down all info regarding the test. They don't even have a link or info for doctors who want to order the test?
They play a really bad game of chess.
Hi Ukxmrv I,m afraid that they got the entire legal argument wrong our side did not know the law and the poor barrister did not undrstansd the science
This is just unbelievable unprofessional of IC. Its so unprofessional that I dont think there are not any strategy behind it at all.
Its just weird and very bad communication skills.
Who are they communicating to through their website?
A selected and known group of GPs?
Why use a websit if thats the case?
Weird and unprofessional...
How bizarre......and is "an ethically approved research project" something novel? Or are most research projects specified as ethically or unethically approved?
You can also try a Google Site Search
Separate names with a comma.