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Just found this; had not seen it before. Apologies if it's posted elsewhere:I suspect the answer is, you can't. And I have to admit, much as I'd like this to be done, it's surely a non starter. Patient confidentiality must be preserved in terms of personal details.
https://forbetterscience.com/2016/0...tient-privacy-concerns-and-parasite-paranoia/
PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia
Leonid Schneider
The PACE trial case might become a key test for the Open Data movement in academia.
“setting up a kind of ombudsman , i.e. an ‘honest broker’ who would be able to do statistical analyses from a neutral perspective. […] I don’t think the journals could do it – I’m not talking about someone to decide if data should be released, but rather a group who could agree what analyses needed doing and do them competently, in a buffer zone between researcher and critics. I am in very early discussions about a possibility of having some kind of unit with statistics expertise that would be dedicated to this, but we’d have to persuade someone to fund it. It’s possible that the uproar around PACE might just help this happen, as medical profession is concerned that nobody wants to research this topic in current atmosphere”.
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It seems, the issue is basically the legalese of what exactly the patient participants of the PACE trial have signed their consent to."
Loads of stuff here including:
PACE trial consent form: https://www.whatdotheyknow.com/request/203455/response/508208/attach/html/3/Consent forms.pdf.html
Data from FINE trial :http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0144