UK Biobank doing an Ask Me Anything thread this Thursday, pre-event thread.

So the official event thread is here, https://www.s4me.info/index.php?thr...th-december-2017-2-30-to-3-30pm-gmt-utc.1458/, but this thread is here to allow discussion of it before hand, so discuss away...

 

I'd like to put this question: What do you think patients might not realise about the utility of the biobank for research?

And another, more specific one: How much time and money (very roughly) do you think the biobank would save researchers wanting to do, say, a study of 100 ME/CFS patients?

 

I'd like to know if the biobank requires - or encourages - certain standards or research methodology and/or openness from researchers who want to use the samples?

 

Are there brain samples in the biobank? If not now, in the future perhaps?

Compared to a while ago, are more researchers applying to get access to the biobank samples now? Have any applications been turned down?

 

I would like to know whether there are plans to resample patients that move from mild/moderate to severe to see if there are any measurable changes over time as the disease progresses.

 

stuff like reserve a portion for exploring and the rest for formal experiments? require pre-registered studies? require reporting of negative resuls? riffing on @Joel.

 

I wonder are they aware of Ron Davis recent remarks about storage of samples and how it can impact tests, and whether their storage conditions/ sampling collection procedures facilitate all possible tests, including any newer tests.

 

S4ME Facebook post advertising the event. Remember, sharing is caring!

Code:

https://www.facebook.com/sci4me/posts/498058763913871

 

@Andy, did you want to add the event thread to the calendar?

 

Thanks for the reminder

 

Bumping.

 

I'm sure I should be able to put this more concisely:

I've thought that a good way of getting more CFS studies done, would be to have researchers for other conditions make use of 'CFS' as an ill-health control, where patients were likely to have a range of different causes of their own ill-health, and suffer from many of the secondary problems related to ill-health. eg: if there was a potentially interesting abnormality found in those with MS, compared to healthy control, checking to see if it was shared by CFS patients might help let people assess how likely it was to be specifically related to MS.

Is something like that a potential use of the biobank, that could appeal to researchers looking for a control group? Does the uncertainty about the causes of CFS mean it's something other researchers might avoid as an ill-health control group? Or would differences in the way samples were collected for the biobank vs independently collected samples for other conditions mean that this is not something the biobank is really suited to?

 

Facebook post to share to promote this.

Code:

https://www.facebook.com/sci4me/posts/499069103812837

 

Bit of a risky title, isn't it? 'Ask Me Anything'?

 

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