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DecodeME - UK ME/CFS DNA study underway

Discussion in 'ME/CFS research news' started by NelliePledge, Jun 23, 2020.

  1. Andy

    Andy Committee Member

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    It will be awareness of it at first, but it could well be that they may not want to take part once they are aware of the study. I suppose a lot of that might depend on how much 'spare' energy they might have, it might be that they consider that they don't have enough spare energy to take part, so our messaging will need to emphasise how we have made it as easy as we can.
     
  2. Andy

    Andy Committee Member

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    "DecodeME testing phase has launched!

    Since DecodeME – the biggest ever study into ME/CFS – was announced, tens of thousands of people have been patiently waiting to take part. A project of this size and nature takes an extraordinary amount of work. Delays and setbacks are inevitable but, in January 2022, we launched the study – starting with a small amount of people.

    In Phase One, we are focusing on participants who requested a paper questionnaire as the first part of the process. This is an alternative to the online questionnaire that the majority of people will use when we enter the wider recruitment phase. Some people chose the paper format because it is less taxing on their symptoms, others because they felt more confident using paper, and others had no access to technology. We encourage all those who can, to use the online questionnaire, when it’s available, because this will help us reach our goal of 25,000 participants as fast as possible."

    https://www.decodeme.org.uk/decodeme-testing-phase-has-launched/

    Social media posts
     
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Exciting news Andy.
     
    Ariel, Barry, Trish and 2 others like this.
  4. Andy

    Andy Committee Member

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  5. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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    Can someone point me at the Ethics Review board decision, and any Trial Management meetings.
    I have searched HRA, Scotland Ethics review boards (Edinburgh Lothian I think), and the forum and I'm none the wise. I also searched for Chris Ponting recent ethics approvals and couldn't find anything there.

    Will there be a pre-registration document setting out the analysis plan? If so where is it?

    Webinars and videos are not what I am looking for or able to follow.
     
    Peter Trewhitt likes this.
  6. Andy

    Andy Committee Member

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    Notice of the Research Ethical Committee's positive decision can be seen here, https://www.hra.nhs.uk/planning-and...cation-summaries/research-summaries/decodeme/

    A protocol document, that includes detail on our analysis plan, has been written and has been sent for publication.
     
    MEMarge, Amw66, daftasabrush and 4 others like this.
  7. daftasabrush

    daftasabrush Senior Member (Voting Rights)

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  8. Andy

    Andy Committee Member

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    Sorry, can't answer that one.
     
    MEMarge likes this.
  9. Andy

    Andy Committee Member

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    Details on the latest webinar.

    "
    You’re invited to the next DecodeME webinar.

    This webinar will be a chance to hear about the Science behind DecodeME and ask any science-related questions.

    It’s on Wednesday 6th April, 2 - 3pm on Zoom and Facebook Live.
    https://us06web.zoom.us/webinar/register/WN_WYpg66sQTHq3a1d_g6cCpw

    The focus of Wednesday's webinar will be The science behind DecodeME. Join Chief Investigator Chris Ponting and Shona Kerr from the DecodeME team to hear about their roles in the project, how DecodeME fits in to other ME/CFS research and ask any questions related to the science behind DecodeME.

    Send us your science-based questions ahead of the webinar by email to info@decodeme.org.uk.

    If you can’t make the webinar, don’t worry. There will be a recording available afterwards on our website, https://www.decodeme.org.uk/blog/

    To watch the recording of our last webinar on the study's Patient and Public Involvement click https://www.decodeme.org.uk/january-webinar-recording-transcript/"
     
    MSEsperanza, cfsandmore, Sean and 4 others like this.
  10. Andy

    Andy Committee Member

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    ME Research UK have funded a PhD student who will work with Chris Ponting, analysing the data generated by DecodeME.

    Link to details, UK: News from ME Research UK
     
    MEMarge, Tia, MSEsperanza and 14 others like this.
  11. Andy

    Andy Committee Member

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    Latest update on DecodeME

    "Quick summary:
    • DecodeME has welcomed its first test participants and has received valuable feedback from them.
    • We are working to make improvements to the questionnaire after receiving feedback from these participants in the testing phase.
    • We are creating a new online system for the online questionnaire as we are no longer working with the questionnaire system adapted from the You and ME Registry (with Solve ME) due to technical challenges.
    • Once the online system is ready, more participants will be invited to take part in the continued testing phase before the study launches its full recruitment.
    We will send you your invitation to take part once the study full opens recruitment and will let you know when there are more updates."

    https://www.decodeme.org.uk/decodeme-project-update/
     
    Solstice, Starlight, EzzieD and 17 others like this.
  12. Trish

    Trish Moderator Staff Member

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    Thanks for the update, Andy.

    It sounds like it's been a lot of work getting the study up and running. Thanks to all involved. I really appreciate the team's thoroughtness and determination to get it working properly even though it has meant some unavoidable delays and changes to the original plans.
     
    Solstice, bobbler, EzzieD and 17 others like this.
  13. Tia

    Tia Senior Member (Voting Rights)

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    I second this! The DecodeME webinars and communication in general have been excellent and it's so reassuring to feel that the study is being done properly even if it is taking a bit longer than projected. I really appreciate the team's open communication and commitment to do things right rather than cut corners.
     
    bobbler, chicaguapa, Sean and 5 others like this.
  14. Tia

    Tia Senior Member (Voting Rights)

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    @Andy do you know if the latest webinar will be up on youtube or the blog soon? I want to share it with a non facebook user!
     
  15. Andy

    Andy Committee Member

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    Not sure when but I would guess by the end of the week.
     
  16. janice

    janice Senior Member (Voting Rights)

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    That would be so great to have a look at this. Thank you for chasing.

    I keep getting tempted to sign back up with Facebook etc but usually I’m much better without it.
     
    Solstice, Snowdrop, Tia and 1 other person like this.
  17. Andy

    Andy Committee Member

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    SNT Gatchaman, Sean, ahimsa and 2 others like this.
  18. Andy

    Andy Committee Member

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    MEMarge, Ravn, Sean and 5 others like this.
  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Will the final questionnaire be made public? I expect it will be superior to others currently in use - in which case is would be good if it could be adopted by other groups (or adapted to suit a particular study or use).
     
  20. Andy

    Andy Committee Member

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    I'd like to say yes straight away but I am double checking and will confirm it.
     
    Ravn, bobbler, MEMarge and 2 others like this.

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