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UK Genome Wide Association Study (GWAS) project: indicate your support and/or willingness to take part and/or join the mailing list

Discussion in 'Advocacy Action Alerts' started by Andy, Dec 23, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    An email that has been sent to all who signed up for updates. Still possible to sign up for updates at https://mebiomed.org.uk/get-involved/
     
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Really excellent thank-you letter from the Partnership this morning - big congrats to whoever wrote it. They did a really good job of acknowledging patient input and they're clearly listening to patients on all sorts of fronts.
     
  3. obeat

    obeat Senior Member (Voting Rights)

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    I am signed up for updates but didn't receive an email. I've checked spam/ junk files.
     
  4. Andy

    Andy Committee Member & Outreach

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    Thanks, I will double check but I'm sure that we will have done a single mailshot to everybody on our list so, if you haven't received it, then either the details we have for you are incorrect or your email providers spam filter has intercepted it (on a personal note I had to abandon one of my email addresses due to how aggressive the providers spam filter was). Once (/if) we have our funding, we will be moving our current temporary mailing list over to a dedicated one so if it's being intercepted that might solve it or at that point you could try signing up again.

    Appreciate none of those are ideal and/or immediate solutions, however I will obviously keep the forum updated and we will put out social media updates as well when appropriate (we currently have Facebook and Twitter accounts).
     
  5. Andy

    Andy Committee Member & Outreach

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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Apologies for a bit of cross-posting, but on the FAQs page of the DecodeME website, it says:

    How long will the GWAS study take to complete?
    In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released.

    So if we can get 20,000 eligible patients by March 2021, it looks as though we can knock four years off this thing.

    Let's email our PwME friends!
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    @Andy, I'm signed up to this list but haven't received an email to tell me that the study has been funded. Is a message going out?
     
  8. Andy

    Andy Committee Member & Outreach

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    Should have been, we are checking on it now.
     
  9. Sasha

    Sasha Senior Member (Voting Rights)

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    It would be interesting to get an update on how many new registrations the project gets today, @Andy. :)
     
    Dolphin, Trish, Andy and 1 other person like this.
  10. Andy

    Andy Committee Member & Outreach

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    That's something we are definitely looking to monitor.
     
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