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Solve ME/CFS Initiative's ME/ CFS Patient Registry: You + M.E.

Discussion in 'News from organisations' started by Andy, Jan 12, 2018.

  1. Andy

    Andy Committee Member

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    Preview of the project.
    http://solvecfs.org/wp-content/uploads/2018/01/Chronicle_National_Patient_Registry.pdf

    ETA: Title, and minor formatting corrections.
     
    Last edited: Sep 12, 2019
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  2. Trish

    Trish Moderator Staff Member

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    Sounds really good. Solve do seem to be a very effective organisation, and great at collaboration.
     
  3. Andy

    Andy Committee Member

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    Merged thread

    SMCI: National ME/CFS Patient Registry Meet the Community Guide – Brian Vastag


    https://solvecfs.org/national-cfs-patient-registry-meet-community-guide-brian-vastag/
     
    Last edited by a moderator: Jul 20, 2022
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  4. Trish

    Trish Moderator Staff Member

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    Well, I've read what Jennie Spotila and Brian Vastag say about the SMCI patient registry but I'm not really any the wiser. Is there a description anywhere of what kind of data they will be collecting, whether it ties in with biomedical research, and who can take part?

    I've just noticed it's called a national patient registry - which presumably means it's just for the USA.
     
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  5. Andy

    Andy Committee Member

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  6. Andy

    Andy Committee Member

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    Webinar: Solve ME/CFS Initiative, "You + M.E.: A community resource, built by the community", 6th December 2018

    Register at https://register.gotowebinar.com/register/5744870584301904899

    ETA: Title
     
    Last edited: Sep 12, 2019
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  7. Andy

    Andy Committee Member

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    Recording of the webinar now available on Facebook here
    Code:
    https://www.facebook.com/SolveMECFSInitiative/videos/2194607644084672/
     
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  8. Andy

    Andy Committee Member

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  9. Andy

    Andy Committee Member

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  10. Ravn

    Ravn Senior Member (Voting Rights)

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    After a quick scan of their website (https://solvecfs.org/eligibility/) I wasn't clear about whether the You + M.E. registry was a US or an International initiative so sent them an email enquiry. Here's their reply: International.
    Pre-register here if interested: https://solvecfs.org/you-m-e-registry/
    Will be interesting to see more detail next year.
     
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  11. Andy

    Andy Committee Member

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    From an email sent today by Solve

    Thank you for being one of the first to pre-register for the You + M.E Registry and Biobank. It’s been awhile since we’ve checked in, so we wanted to give you a progress update.

    As you know, the goal of You + M.E is to collect health information and biological samples from people living with ME/CFS and healthy volunteers, and to make the anonymized data and samples available for research. The growth of this Registry will create an information hub that will help us better characterize ME/CFS and define disease subtypes.

    There are two key components to achieve this goal:

    1. Collaboration and partnerships with other registries and research groups that will allow us to build the biggest dataset possible
    2. Tools that will incorporate rich sources of data, including a way to record health information on an ongoing basis
    You might be wondering why the Registry is taking longer than we anticipated to launch. The answer is that we’ve been working hard behind the scenes to establish partnerships: you may have seen our recent announcement here.

    [​IMG]

    We’ve also developed a mobile app for easy capture of data over time. We recently ran the app through beta testing with a group that included people living with ME/CFS and their loved ones, and experts from clinical care, research, and technology. Feedback from this test group is currently being incorporated. Below are some screengrabs of the beta version app.

    [​IMG]

    Thank you for your patience and continued partnership as we build a big data revolution for ME/CFS!
    A reminder that this Q&A with Sadie Whittaker from Solve discussed the registry and app, https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/
     
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  12. Andy

    Andy Committee Member

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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    I will certainly be taking part. Looking forward to it. At first I wasn't sure because it was supposed to have been already funded as part of a NIH grant and seemed to duplicate efforts:
    But precise.ly don't appear to have made any progress. There was an announcement that the service would have started early this year but it almost appears to have closed down. It appeared to be quite big, a side venture from the 23andme founder. But now what?

    https://www.jax.org/news-and-insights/2017/september/new-chronic-fatigue-center-grant

    So basically SMCI is doing the work that NIH already funded? Or is it different? Additive? Which is probably a good idea since they can't seem to commit to anything but that already appeared to have significant funding. Will this patient registry be part of the common data elements? What happens to that precise.ly funding then?

    Still not much transparency about what is happening out of NIH funding. Same old same old.
     
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  14. Andy

    Andy Committee Member

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  15. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Merged thread

    You + M.E. (International ME/CFS Registry) Website Live!


    [​IMG]

    Registries are foundational in understanding, treating, and curing diseases. This approach is desperately needed in ME/CFS. That’s why we’re proud to have created one for ME/CFS that will be accessible to all.

    With the generous help of our partners and the community, we have built a data platform and symptom tracking mobile app that will help connect patients, healthy controls, clinicians, and scientific researchers across the world to help solve the mystery of this debilitating disease.

    In the coming weeks, the You + M.E. platform and accompanying mobile app will be launched to a testing group and shortly after will be available to all participants. In the meantime, check out the You + M.E. website to learn more about the Registry and let us know what you think at registry@solvecfs.org

    [​IMG]
    Support this effort to bring a global data repository for ME/CFS. Please make a gift today.

    Thank you,

    [​IMG]
    Sadie Whittaker, PhD
    Chief Scientific Officer
    Solve M.E.


    P.S. Make sure to check out the You + M.E. Impact Tool, designed to create a visual way to communicate the impact of ME/CFS.
     
    Last edited by a moderator: Jul 20, 2022
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  16. Ravn

    Ravn Senior Member (Voting Rights)

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    Looking good!

    One question: If you had pre-registered, does that mean you have automatically joined the registry, or do you need to re-sign up on the website now?

    I tried the Impact Tool and almost stopped right at the first question because it asks about fatigue, the second question, too. That allergy to the f-word...

    The next questions are about PEM - much better - only the answers here will depend a lot on how well you're pacing and could give a falsely positive picture. There's also a ceiling effect with respect to recovery time, the longest possible option being 5+ days. A relevant question would be how much (or rather how little) you can do without triggering PEM though I admit I don't have any idea how that could be incorporated into the app.

    There's another ceiling effect with respect to how many things you miss out on in a month, 20+ being the highest option. 20 would mean having days in a month when you don't miss out on anything - if only!

    I realise there's a plus sign in 5+ and 20+ but those figures are just so much lower than my reality, they don't feel at all representative.

    However, I do like the app's focus on missing out on things. That's something most people should be able to relate to.
     
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Snap!
     
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  18. alktipping

    alktipping Senior Member (Voting Rights)

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    I do not own a mobile phone . I can get confused enough on the land line . I once spent 3 days phoning the wrong cab no . until my mum came over to see what number I was using .
     
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  19. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Thanks so much for sharing that feedback! I'll pass it along to the research team and report back.

    There's also an "add detail" function that I think is not yet available on the beta version? Did you see that on your version? My understanding is that for every day you report using the basic app function, there's an "add detail" area to elaborate on symptoms and triggers if you have the energy. We heavily emphasized "low movement" as a key priority during the app's development. "Low movement" meaning the lowest possible amount of scrolling/swiping/tapping so that using the app is not physically demanding to use.

    I think that 5+/20+ may be part of the "low movement" compromise so that there is less scrolling overall.
     
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  20. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Oh! Almost forgot -

    Here's a follow-up announcement from the research team:


    You might have heard by now that we’re readying the You + M.E. Registry for launch. Right now, a small group of users are gearing up to test the Registry platform and mobile app.

    [​IMG]


    So, what is a Registry anyway and why does it matter for ME/CFS?

    A Registry is an organized system that allows us to collect large amounts of uniform data from individuals with a specific disease. The resulting large dataset will better enable researchers to identify causes and treatments by:

    • Yielding a deeper understanding of the disease
    • Helping identify subtypes
    • Facilitating the engagement of pharmaceutical companies
    • Speeding up clinical trials and parsing through the most effective treatments
    • Helping people with ME/CFS track symptoms day-to-day, making it easier to share that information with healthcare providers and loved ones and communicate the impact of ME/CFS
    • Supporting connectivity and collaboration, making researchers, patients, and healthy controls partners in progress in the fight against ME/CFS
    You can learn more about You + M.E. here: http://go.solvecfs.org/e/192652/201...h=QB8fJZ8KDUHoEBSFNG7YIXqFRVVS5nTbS6m0GUNnCT4

    Thank you for your support as we build a big data revolution for ME/CFS!




    [​IMG]
    Sadie Whittaker, PhD
    Chief Scientific Officer

    Allison Ramiller, MPH
    Director of Research Programs
     
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