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Yeah, I noticed that as well, a quick proofread would not have gone amiss!
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PACE Trial and PACE Trial Protocol
- Thread starter Dolphin
- Start date
Kati
Patient in training
- Messages
- 5,497
This has just published. It is behind a paywall, so I am not sure if it is a commentary or a peer-reviewed paper.
The PACE trial missteps on pacing and patient selection
Leonard A Jason
Abstract
As others have pointed out a variety of complicating factors with the PACE trial (e.g. changing outcome criteria), I will limit my remarks to issues that involve the composition of adaptive pacing therapy and issues involving patient selection. My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes.
The PACE trial missteps on pacing and patient selection
Leonard A Jason
Abstract
As others have pointed out a variety of complicating factors with the PACE trial (e.g. changing outcome criteria), I will limit my remarks to issues that involve the composition of adaptive pacing therapy and issues involving patient selection. My key points are that the PACE trial investigators were not successful in designing and implementing a valid pacing intervention and patient selection ambiguity further compromised the study’s outcomes.
RogerBlack
Senior Member
- Messages
- 902
See post in its own thread.
It's a commentary pretty much - my understanding is that it is peer reviewed.
it contains no original research.
Tom Kindlon
Senior Member
- Messages
- 1,734
Tom Kindlon
Senior Member
- Messages
- 1,734
Tom Kindlon
Senior Member
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- 1,734
Esther12
Senior Member
- Messages
- 13,774
It looks like this may be new. PACE with guidance on their data sharing policy:
http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE Data Sharing Policy.pdf
Google has no record of it until recently.
http://www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE Data Sharing Policy.pdf
Google has no record of it until recently.
Graham
Senior Moment
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- 5,188
- Location
- Sussex, UK
Hmmm! "We prefer to collaborate directly with other researchers. On occasion, we may provide data without direct collaboration, if mutually agreed."
In other words, we can't trust the data to produced the result we want.
In other words, we can't trust the data to produced the result we want.
I
It might be useful to compare it with this: https://www.mrc.ac.uk/research/policies-and-guidance-for-researchers/open-access-policy/
It might be useful to compare it with this: https://www.mrc.ac.uk/research/policies-and-guidance-for-researchers/open-access-policy/
Graham
Senior Moment
- Messages
- 5,188
- Location
- Sussex, UK
Yes, an interesting contrast. The PACE team will let you borrow some flour and milk, as long as you bake what they want, and invite them round to eat it.
..and despite the fact that the people who gave them the money to buy those ingredients want the PACE team to share the cake with all their neighbours & friends...
Edit: yes I suppose the PACE team DO only want to share it with their friends. But that wasn't what they signed up to do when they engaged with the MRC.
slysaint
Senior Member
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- 2,125
Snow Leopard
Hibernating
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- South Australia
Yep.
Otherwise they wouldn't keep rejecting everyone (professional researchers) who keep asking...
RogerBlack
Senior Member
- Messages
- 902
It would be interesting to see a list of researchers they've denied access to the data.
Though I suspect they would - arguably reasonably - not be able to release the names.
Though I suspect they would - arguably reasonably - not be able to release the names.
- Messages
- 83
The pdf creation date (from the document Metadata) is 17 January 2017.
The document seems to have been created on the 17th of Jan 2017
I suspect this clause would be in violation of the data protection act
They did not get consent for sharing personal data with others so they cannot share. They can share most variables as it is not personal data but here they seem to be suggesting they would share personal information here with the right plam.
Otherwise they seem to be treating data as if it belonged to them personally rather than generated as a result of government grants whilst they were being paid for by the government and as a result of experimenting on patients.
Basically they are saying they will pick and choose who can analyze data and then they ask to vet results prior to publication. The document in itself however is an admission that the data is not personal data and therefore does not come under the data protection act. Hence they are basically admitting they are just controlling access to the data.
Also it would be interesting to see a list of who they have shared data with (and what bits). They claim to have shared it with independent scientists but only ever quote Cochrane and had to drop the independent label there as they were involved in the protocol design.
I can think of three (possibly 4) people they have turned down without reason or even offering to share data under a confidentiality agreement.
Presumably (some of?) the other researchers who accessed the data would also have spotted the absurdity of the PACE authors' published results. Which would be another reason the PACE authors would not wish to reveal them; otherwise by now I suspect they would have been unable to resist finding a way to reveal them as supporters. Such researchers might themselves wish to stay out of the limelight, either because they did not spot what they should have done, or because they did but stayed silent about it.
AndyPR
Senior Member
- Messages
- 2,516
Coyne comments on the new restrictions - https://jcoynester.wordpress.com/20...ce-for-researchers-requesting-access-to-data/