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Younger UAB Registration Open

Discussion in 'Other Health News and Research' started by SDSue, May 7, 2015.

  1. SDSue

    SDSue Southeast

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    UAB Neuroinflammation, Pain and Fatigue Laboratory

    Younger's lab has opened registration for their patient data base. The questionnaire took me less than ten minutes and can be submitted online. You can go to the main page and sign up for emails, which is how I got access to the patent data base registration.

    @Sushi @Kina If it's appropriate, I can post a link directly to the database registration.
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    Sure!

    Sushi
     
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  3. SDSue

    SDSue Southeast

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    SOC, Sushi, WillowJ and 2 others like this.
  4. Valentijn

    Valentijn Senior Member

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    I'm already pissed off at this questionnaire on the first page. "Fatigue" is not my primary medical problem.

    And using 01/01/2015 as the example for entering the date is not very helpful when it is not said if month or date should be first. Outside of the US, it is done backwards. Since they don't seem to be aware of this, I'll assume they're only aware of the US convention and will use that (month-day-year).
     
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  5. Sasha

    Sasha Fine, thank you

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    I'm confused about this - from the intro, it seems to be to get data to go along with blood test results, presumably as part of a study they're doing at the University of Alabama.

    Have they said something somewhere that says that anyone can take part, even if we won't be giving blood?
     
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    The survey asks whether the participant could come to the university for a time (25 days??), but asks for survey completion even if the participant cannot come.

    From what they have said before, IIRC, I think they are building a database of people that can be called upon for various studies.

    It's theoretically possible to send blood from elsewhere (possibly not from overseas, although it's theoretically possible to have overseas centers participating), for a study, but it's better if the study authors can examine the participants as part of the entry requirements, or at least partner with other centers to examine participants in a planned and organized manner.

    They ask enough detailed questions that they could potentially publish questionnaire data just from the intake info.
     
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  7. Sasha

    Sasha Fine, thank you

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    The intro says that the purpose of the qnrre is to see if you can take part in the blood draw.

    Is the bit about not having to do the blood draw in the actual qnrre once you start? I can't see it in the explanation.
     
  8. Sasha

    Sasha Fine, thank you

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    Oh! I see it at the end of the qnrre but that seems to be a question about whether you could come in for 25 consecutive days. I'm not certain that they don't want at least one blood draw.

    Am I reading this wrong? Having trouble focusing today.
     
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  9. Valentijn

    Valentijn Senior Member

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    My impression is that they do want a blood sample from qualified volunteers. But I see nothing requiring going there to do it, and as @WillowJ mentioned, blood can be shipped. Despite a few annoyances with the questionnaire, it does seem pretty good for identifying ME/SEID patients, and it's also possible that they could call or email to get more data regarding the diagnosis (name of physician, medical records, etc) if the basic information supports the claimed diagnosis.

    The 25 day visit looks like it would be something entirely different, unless there's a major typo there. And I can't believe I just typoed "typo" :rolleyes:
     
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  10. Sasha

    Sasha Fine, thank you

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    Thanks!

    And I tyop all the time...
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    the post-questionnaire info indicated that they would make contact to follow up, eventually, but expected many responses so figured it would take a while to get through everyone.
     
  12. SOC

    SOC Senior Member

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    o_O Uh, ME/CFS/SEID? Pain is a small problem. Fatigue is hardly my primary medical problem. Fatigue? Really? I have PEM. I have exertion intolerance. I probably have exercise intolerance. Fatigue? Not so much if I pace properly and stay up with my meds.

    Good lord, have you got a year? And maybe a much bigger box to write it all in? I could write a book....

    Then they go on with a bunch of questions about pain....

    I hope they get lots of excellent information for their study, but it certainly doesn't sound like they're looking for patients like me. It all sounds more fibro than ME to me.
     
  13. Sushi

    Sushi Senior Member Albuquerque

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    They sent a confirmation email with an address where you could write for more information. I wrote and if I get an answer I'll pass it on here.
     
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  14. Kati

    Kati Patient in training

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    You know, they may make mistakes here and there, but if they are willi g to research this disease and find biomarkers, I am willing to overlook these mistakes.

    But then that is just me.
     
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  15. SOC

    SOC Senior Member

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    Not just you. :D I agree completely.
     
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  16. rosie26

    rosie26 Senior Member

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    Some subsets of ME have more pain. I get pain in my hands and head, neck/shoulder, sometimes lower back. Maybe he is trying to catch a subset specifically? Just speculating. Could be wrong. I only briefly looked through the questions.
     
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  17. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    That's what the "other" box was for. I used it. ;) I have fatigue and I have pain, but I would never describe either as my primary medical symptom/problem.

    I thought it sounded like they were trying to study both people with a fibro diagnosis and people with a disease like ME.
     
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  18. valentinelynx

    valentinelynx Senior Member

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    My issue is that I have fatigue AND pain and both are debilitating, can't pick one or the other as the worser symptom. Is the fatigue PEM? Maybe, because I insist on exerting myself (you know, getting out of bed)... ;)

    Agree about the tiny box to fill in the history of your illness. After 20 years, it's a bit more complicated that that!
     
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  19. SDSue

    SDSue Southeast

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    Anyone else get a request for phone interview?
     
  20. Sushi

    Sushi Senior Member Albuquerque

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    You got one? What did they say?

    I just got this:
     

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