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disease symptom blood test treatment results webapp/database?

Discussion in 'General ME/CFS Discussion' started by wholepartthings, May 13, 2018.

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Create a disease symptom blood tests treatment results webapp/database?

  1. Yes

    4 vote(s)
    66.7%
  2. No, bad idea

    0 vote(s)
    0.0%
  3. Maybe

    2 vote(s)
    33.3%
  1. wholepartthings

    wholepartthings

    Messages:
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    Likes:
    12
    Hello,

    what about creating a webapp/database where each user enters his data:
    - disease
    - symptoms
    - blood check-ups/tests
    - treatment/drugs
    - results of the treatment/drugs

    Target:
    - find similarities and differences
    - answer questions why some therapy helps some and harms others

    Is there already a webapp existing with these features?

    I know this is all sensitive data and this would be a big project.
    And valid data is required... (How to validate?)

    Some people get better with IVIG, others with antiviral drugs, others with ...

    It would be great to see the differences in these people and maybe help to find the right therapy.

    Good/bad idea?
     
    iwillwin1day and adambeyoncelowe like this.
  2. pamojja

    pamojja Senior Member

    Messages:
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    Likes:
    1,201
    Austria
    The first created by selfhacked.com just came out:



    to sign up its 35,- $ for the first 6 months. Though it in its early stage with 101 basic lab tests, they are allegedly working to make it much more comprehensive.
     
  3. Wishful

    Wishful Senior Member

    Messages:
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    1,184
    The idea is good, if it's done properly. I can see lots of potential for abuse and misapplication, and specifically abuse by the pharmaceutical industry. I also think that anyone who set it up might face legal attacks despite all the 'use at your own risk' disclaimers. A lot of the information might be out there anyway, such as in these forums, but offering it as what appears to be a self-diagnostic tool changes its status. It might require presenting it as a medical statistics database or some such thing, with a clear 'this is not to be used as a diagnostic tool' <nudge, nudge, wink, wink> disclaimer. I'm voting 'maybe' just because good or bad depends on the details.
     
  4. wholepartthings

    wholepartthings

    Messages:
    5
    Likes:
    12
    I found this page. It offers many functions, except blood tests comparition: patientslikeme.com
    But we should keep in mind that this is a company and they sell data to make money:
    support.patientslikeme.com/hc/en-us/articles/201245750

    (I would prefer a non-profit organization.)
     

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