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

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 ask whether there is a central way of storing the data from all the trials on the biobank patients so, for example, associations could be looked for between the outcomes of, say, a metabolomics study, a cytokine study and a genetic study on the same patients. And will this data be accessible to other researchers to work on such cross study analysis.

I'd also like to ask whether there are links with other biobanks and if so, what are the benefits of doing so, for example collating genetic data.
 
I'd like to ask basic material questions. What are the conditions that allow the conservation of samples? How long can a sample be kept? How do you share the samples: do the researchers have to come to London or can you send samples and if yes how?
And are there tests that can't be run on stocked samples and have to be done on fresh 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?
 
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'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?
 
Another group of question from me.

The longitudinal study that is being funded by the NIH.

Are there any results from this so far?

Are you looking at mitochondrial energy production like in the recent Newcastle University study which showed low mitochondrial activity in blood cells. If so, are you using the Seahorse technology as they did?
journals.plos.org/plosone/article?id=10.1371/journal.pone.0186802

And are the patients in the longitudinal study wearing actometers as a gauge of activity levels over time?
 
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