Closed UK: DecodeME updates, was recruitment thread.

Thanks for the update @Andy

I have a dim memory of Chris saying somewhere, can't recall where not so long ago, that there were disappointingly few external parties applying to access the DecodeME data for their own studies. Has interest picked up? If not, what can we do in the new year to help things along?

Other than that sounds like you're making good progress :party::thumbsup:
 
Ravn said:
I have a dim memory of Chris saying somewhere, can't recall where not so long ago, that there were disappointingly few external parties applying to access the DecodeME data for their own studies. Has interest picked up?
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No, interest hasn't yet picked up, although we suspect that it will once we publish the genetic results.

Ravn said:
If not, what can we do in the new year to help things along?
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Pointing out that the data is available to researchers that you might be in touch with? Or if you do social media then sharing the information there might just attract attention.
 
@Andy, there is speculation and anticipation on several threads about when we might see the DecodeME study published.

I am not asking you to reveal details not in the public domain, but maybe it would help some of us eagerly and anxiously anticipating it if you could give a hint about whether it is weeks or months away, and whether it will be released as a preprint first.
 
I understand the frustrations but I am currently unable to reveal any further details, other than confirming that, just like with our initial questionnaire analysis, we intend to preprint our results when we can.
 
EndME said:
Hi @Andy, I'm aware that precisionLife has been granted access to the DecodeME data. Are you aware of any requests to use the HEAL 2 algorithm, that was recently used in the Zhang et al paper, on the DecodeME data?
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Hi. The public details that DecodeME has on projects that have had access approved can be seen here, https://www.decodeme.org.uk/approved-studies/. For confidentiality reasons we wouldn't want to reveal any more information than that is available there.

ETA: Added missing "than".
 
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Andy said:
Hi. The public details that DecodeME has on projects that have had access approved can be seen here, https://www.decodeme.org.uk/approved-studies/. For confidentiality reasons we wouldn't want to reveal any more information that is available there.
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Thanks, I expected as much, but maybe some cryptic messages on S4ME are motivation enough for someone to apply to do this work.
 
hotblack said:
It may be worth seeing my question and Andy’s response in the Zhang paper thread too.
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Is this data resource helping to gradually increase the pool of researchers taking the biomedical aspects of ME/CFS more seriously and increasing the useful knowledge base beyond the incurious repetition of the BPS research based on misinterpretation of experimental bias as a justification for their psycho behavioural interventions?
 
@Andy I'm not sure if I ticked the box to allow my data to be used by other researchers when I sent off my sample. I think I may not have done as I was a bit unsure what it meant. I would now like to give permission for this if I haven't already. Do you know if it is worth contacting DecodeME or would it not be possible for them to change it at this point anyway? If you're not sure don't worry - I'll just email them! TIA, Tia.
 
Tia said:
Do you know if it is worth contacting DecodeME or would it not be possible for them to change it at this point anyway? If you're not sure don't worry - I'll just email them! TIA, Tia.
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It is worth contacting them

If you are a DecodeME participant and wish to change your consent status, either to make your data available for data access, or to withdraw your consent, please contact the DecodeME project team at DecodeME@ed.ac.uk. We will be happy to update your consent status for you.
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https://www.decodeme.org.uk/faqs/can-i-change-my-consent-choices/
 
Brilliant, thanks @hotblack and @Andy . Reading that link, I think it was maybe the bit about giving access to NHS records that I didn't give permission to as I wasn't sure how much personal information that would include. I'll definitely message them though just to check I gave permission for my data to be shared with other researchers.
 
Progress update posted to social media.

"This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible.

We are on target to deliver the results before the completion of the study in August and appreciate your continued patience and support."
 
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