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

Discussion in 'General ME/CFS News' started by Andy, Dec 10, 2017.

  1. Andy

    Andy Senior Member (Voting Rights)

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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    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?
     
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  3. Trish

    Trish Moderator Staff Member

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    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.
     
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  4. Cheshire

    Cheshire Senior Member (Voting Rights)

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    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?
     
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  5. Joel

    Joel Senior Member (Voting Rights)

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    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?
     
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  6. strategist

    strategist Senior Member (Voting Rights)

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    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?
     
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  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    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.
     
  8. Samuel

    Samuel Senior Member (Voting Rights)

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    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.
     
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  9. BurnA

    BurnA Senior Member (Voting Rights)

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    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.
     
  10. Andy

    Andy Senior Member (Voting Rights)

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    S4ME Facebook post advertising the event. Remember, sharing is caring! ;)
    Code:
    https://www.facebook.com/sci4me/posts/498058763913871
     
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  11. Sasha

    Sasha Senior Member (Voting Rights)

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

    Andy Senior Member (Voting Rights)

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    Thanks for the reminder :)
     
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  13. Andy

    Andy Senior Member (Voting Rights)

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    Bumping.
     
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    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?
     
  15. Cheshire

    Cheshire Senior Member (Voting Rights)

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    I suppose different tests need a different amount of blood to be run (not sure anyway).
    What volume of blood is collected from a donor? On average, how many tests can be done with one donor?
     
  16. Andy

    Andy Senior Member (Voting Rights)

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    Facebook post to share to promote this.
    Code:
    https://www.facebook.com/sci4me/posts/499069103812837
     
  17. MeSci

    MeSci Senior Member (Voting Rights)

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

    Trish Moderator Staff Member

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    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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  19. Valentijn

    Valentijn Not a moderator

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    Moderators are standing by with trebuchets at the ready :emoji_expressionless: :emoji_golfer::emoji_dizzy::emoji_japanese_goblin:
     
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  20. Trish

    Trish Moderator Staff Member

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    I'm concerned I will completely forget until it's over. If so, and if there's time, can someone else pose any of my questions for me if they seem useful?
     
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