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Should S4ME have a working group to facilitate recruitment into research studies?

Discussion in 'General ME/CFS News' started by Sasha, Dec 5, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    There seems to be interest in this idea from another thread:

    Discuss! :)
     
  2. Trish

    Trish Moderator Staff Member

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    We have a subforum specifically for flagging up research studies that are currently recruiting here.
    ''
    Recruitment into current ME/CFS research studies

    A forum for discussing or making members aware of current research studies or trials that are recruiting. Each thread should flag up a clinical trial that is recruiting, and allow discussion to help members assess whether they want to volunteer. Prefixes will represent open trials and will be changed once they are closed.
    ''

    If any members want to work on collecting information about studies that are recruiting, they are welcome to add them to this forum.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    I just had a look at that subforum, thinking it would be good maybe to paste my thread there, and I can see that there are flags to indicate 'Open', 'Still to open' or 'Closed' for each study, but it's not clear from the actual titles of the threads in all cases that these are studies that are recruiting. So if someone clicks 'New posts' and sees a list of posts, I don't think it's necessarily obvious what those threads are about. I wonder if some of them could be retitled.

    I think that's a very good idea - having people do an active search.

    But does anyone fancy working on the promotion side of this? (Not something I'm able to do myself - I steer clear of social media and don't understand how the platforms operate.)
     
  4. Trish

    Trish Moderator Staff Member

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    Good point. I'll take a suggestion to the committee that the label be changed to make it clearer.
     
  5. Sasha

    Sasha Senior Member (Voting Rights)

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    Yes, 'Study recruiting', 'Study to start recruiting' and 'Study no longer recruiting' would be clearer (although a bit long). If there's a word limit on those buttons, the actual titles of the studies could maybe be edited to make it clear what they are.
     
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    I think a world map showing recruiting sites would be good, plus something to indicate those where location isn't critical (e.g. studies where you just upload your data, or where you can travel to take part as a one-off or can mail in your blood samples or whatever).
     
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  7. Barry

    Barry Senior Member (Voting Rights)

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    Important to try hard and avoid inadvertent recruitment bias, which may be a trap dedicated recruitment efforts might stray into.
     
  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I seem to remember we had a discussion around recruitment with the person who has that database where they’re asking patients for details of their health and sending updates on studies to them. I seem to remember also that someone mentioned that Solve or ME Action were looking at doing something to help with recruitment. Sorry this is vague. Here’s the thread i will try to find where action was mentioned. https://www.s4me.info/threads/new-research-studies-posted-at-cfs-me-registry.5645/
     
  9. Sasha

    Sasha Senior Member (Voting Rights)

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    But when researchers advertise for patients, how can this be avoided? @Jonathan Edwards, any ideas? Studies seem to be really struggling to recruit patients, including the crucial intra-mural NIH study.
     
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  10. Sasha

    Sasha Senior Member (Voting Rights)

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    Would anyone be willing to contact Solve and ask them what they're doing? They may not be thinking in terms of the sort of social media thing that we're talking about.
     
  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  12. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks - I'll post that here for reference:

    I’m reposting here a link to article about their project https://solvecfs.org/national-cfs-patient-registry-meet-community-guide-jennie-spotila/[/QUOTE]
     
  13. Andy

    Andy Committee Member

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    Sounds like a question you could add to this thread (assuming you are happy to wait for an answer of course).
     
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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    [/QUOTE]

    That seems to be a registry where patients register for the prospect of taking part in research surveys - though to be honest, I found it hard to understand exactly what it is and what it does. I think it would be helpful if it led in with an explanation of one or two sentences.

    But I saw nothing about outreach. The registry sits there passively. I think what we're discussing here is more the promotion of any study, whether online or not.
     
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    I don't understand. What thread?
     
  16. Andy

    Andy Committee Member

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  17. Sasha

    Sasha Senior Member (Voting Rights)

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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    In most situations I don't think researchers should be advertising for patients. This seems to happen a lot in the US and I see it as a serious weakness to any resulting study. For conditions without clear biomarkers like ME the only way to get representative cohorts is to draw from pools of predefined cases from clinics or biobank projects. Ideally studies should draw from shorts that have been established without any reference to the question being asked in the study.

    The importance of this came to my attention in the context of genetic studies -especially Genome wide screening. If you advertise for patients it is perfectly possible that you will find that the main genetic risk factor for being in the cohort is a gene that makes people tend to volunteer for research studies. Normally, finding increased gene frequencies is a pretty robust way to find a causal connection but if samples are not representative that goes out of the window.

    I cannot actually see why it should be hard to recruit patients with ME to studies. It may well be that when people design studies they do not think carefully enough about the feasibility for patients. I suspect studies are often too complicated and time consuming for subjects.
     
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  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Solve have done a number of plugs on Facebook and Twitter for one study that is recruiting in the last month or two.
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    Fully agree. I should probably have said additional recruitment bias.
     

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