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Trial By Error: No Ethical Review of Crawley School Absence Study

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user9876

Senior Member
Messages
4,556
lilpink said:
I can say with some conviction that if you wrote to Bristol University I don't believe you would get any response, this has been tried.
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I think the only way a university will put any form of governance in place is if it is likely to directly harm their reputation or income streams. QMUL spent a lot to cover for PACE. Bristol are happy to have Crawley's bad science and recently promoted her.

I wonder if it is worth trying the commons health select committee (but its chaired by someone who is not sympathetic to ME patients) or the national audit office.

Bristol University has just been found to have failed to publish clinical trial results

https://www.transparimed.org/single...rsity-pledges-clinical-trial-registry-cleanup
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
GreyOwl said:
I don't know who would be responsible for following this up @lilpink. It does appear to be sinister.
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Whereas there appear to be issues with multiple papers, I think given the way in which the BMJ is trying to spin its new 'transparency angle' would lend us a rationale for some heavyweight advocates to come together to ask BMJ Open, in a collective letter perhaps (rather like those sent to The Lancet), to explain these apparent lapses in the approval of this *research* paper. That would seem to be an ideal way forward...hold their feet to the fire in the way in which The lancet's feet are singeing gently on the fireguard as I type.
 
C

Chrisb

Senior Member
Messages
1,051
This may have already been answered. The brain isn't what it was. Some say it never was.

If a service evaluation study be exempt from the requirement for REC approval, why would one not, when publishing, state the exemption rather than quote an inapplicable reference. Even if the ethics approval quoted validly related to a part of the work, and not the whole of it, one would have thought that this should be stated, and the statement of exemption also noted.

From what I see service evaluations are not supposed to be generalizable. By failing to make clear in the publication that it is merely a service evaluation that has been conducted one gives the possibly misleading impression that wider inferences may be drawn.

There seems to have been a lot of ex post facto justification going on.

It appears that having met the MUPPETS we now encounter the NODDIES.
 
slysaint

slysaint

Senior Member
Messages
2,125
I think my brain has engaged; so took another read/look at this.
On the HRA site there is a facility to look up Research summaries using the REC number but they only go back to 2008 so not much good here.
but might be useful at some other stage:
http://www.hra.nhs.uk/news/research-summaries/
(nb rec numbers need to be enclosed eg " xxx").

Without going into detail I've emailed the HRA with a general enquiry giving them the REC number and also listing the papers as listed by @lilpink. I also cc d the Bristol cable.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
slysaint said:
I think my brain has engaged; so took another read/look at this.
On the HRA site there is a facility to look up Research summaries using the REC number but they only go back to 2008 so not much good here.
but might be useful at some other stage:
http://www.hra.nhs.uk/news/research-summaries/
(nb rec numbers need to be enclosed eg " xxx").

Without going into detail I've emailed the HRA with a general enquiry giving them the REC number and also listing the papers as listed by @lilpink. I also cc d the Bristol cable.
Click to expand...

Excellent ,thank you. I think I might be able to predict that the HRA will be about as responsive as tumbleweed, but I get the sense that some of those publishing using the Bristol Cable portal have a particular interest in the way research is being carried out at Bristol, I'd anticipate that you might find more fertile ground in that location.
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I'm too sick at the moment to really follow this. The Bristol Cable newspaper does like to do investigative journalism, including about University of Bristol. They've already done two ME stories this year though. I don't know what their limit would be?! I'm not terribly convinced that this makes a newspaper style story, but quite possibly I just don't understand it right now.
 
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S

SamanthaJ

Senior Member
Messages
219
Just catching up with this thread. Very interesting/chilling.

A few months ago File on 4 covered a vaccine trial with some ethical issues:

http://www.bbc.co.uk/programmes/b08sn973

A new vaccine called MVA85A developed by scientists in Oxford as a booster to BCG was heralded as a possible solution. But when it was trialed on nearly 3000 infants in South Africa it didn't offer any further significant protection.

File on 4 investigates the outcome of tests carried out on monkeys and asks to what extent animal trials are used to help decide whether to go on to test in humans.

How do regulators and ethics committees decide to give their approval and who is looking out for the people who volunteer to take part?
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If I remember rightly, the trial on babies went ahead although a trial on primates had been unsuccesful (ineffective). Parents were not told this, were given literature that implied the opposite.

Wondered if the same reporter might be interested in this? I'm a bit out of my depth understanding this to contact them myself though. I also don't know anything about the reporter.
 
slysaint

slysaint

Senior Member
Messages
2,125
lilpink said:
Excellent ,thank you. I think I might be able to predict that the HRA will be about as responsive as tumbleweed, but I get the sense that some of those publishing using the Bristol Cable portal have a particular interest in the way research is being carried out at Bristol, I'd anticipate that you might find more fertile ground in that location.
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I'm hoping that a) the HRA will notice that the email has also gone to the Bristol Cable so might give me more than a one line answer. and that b) one of the reporters (I noticed the last one, who did the article posted in this thread, is not actually on the Bristol Cable team) might take a closer look.
 
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