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  • #61
    That's pretty interesting.

    At least 34% of those kids were spared wearing a brace needlessly. This comports with other estimates of needless bracewear though it is on the low end... I have seen estimates of 75% to about 90% being needless. If that group is representative, then that is potentially a lot less bracing which was one of the goals in the future that the Scoliscore developers envisioned.
    Last edited by Pooka1; 06-05-2012, 07:46 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

    Comment


    • #62
      By the way, that really goes to show the clinical indicators really aren't so good after all these years for predicting at the ends of the risk spectrum. They tended to greatly underestimate the low risk kids and greatly overestimate the high risk kids.

      I conclude the following are possible explanations:

      1. Clinical observation outside of rigorous controlled studies clearly does NOT give these surgeons a firm clue about curve progression risk for about half their patients with smaller curves. This is actually a penetrating glimpse into the obvious though we still have folks here who think even years and years of clinical work substitutes for controlled studies.

      2. These surgeons are bracing out of fear of being sued or being browbeaten by ignorant parents.

      3. Both #1 and #2.
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #63
        Sorry if I’m asking something well known. That kind of test was tested in an objective way? That is, testing samples of 2 groups of adults: having and not having scoliosis. Of course the test should to be done without knowing which sample belongs to each group.

        Comment


        • #64
          Originally posted by flerc View Post
          Sorry if I’m asking something well known. That kind of test was tested in an objective way? That is, testing samples of 2 groups of adults: having and not having scoliosis. Of course the test should to be done without knowing which sample belongs to each group.
          They need to calibrate the test with known outcomes. Then they apply the formula to unknown outcomes.

          All tests need to be calibrated.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #65
            Originally posted by Pooka1 View Post
            They need to calibrate the test with known outcomes. Then they apply the formula to unknown outcomes.

            All tests need to be calibrated.
            Sorry, it seems I don’t have idea about what kind of test it this. I supposed it was an exclusively genetic test, that is, only genes would be needed to do it, so saliva samples would be the only one needed for this test.
            As a blood test says about a disease evaluating virus founded or not in blood (without any kind of calibration as I know) the scolioscore says about a progressive scoliosis evaluating the state of some groups of genes. That’s what I believed but it seems I’m wrong.

            Comment


            • #66
              Okay I re-read the abstract.

              They are simply comparing the distribution of low, medium, and high risk patients based on two approaches, traditional clinical measurement and Scolicore.

              They showed the two approaches for labeling patients as low, medium, or high risk of progression produce different predictions. So either one or none are right.

              They did not report on which approach was more accurate though the smart money is on Scoliscore if it continues to make accurate predictions.

              The importance of this is to show that the traditional clinical assessment of risk is not accurate at the low and high risk ends. This should not be surprising because surgeons working in uncontrolled situations can't in principle tell what is going on. If they got it right it would be coincidence. In this case they are getting it wrong. For decades. And so many kids have worn the brace needlessly. Many surgeons probably suspected that braces weren't likely to be necessary but parents aren't always rational on this point. Just because a treatment exists doesn't mean it is necessary or effective. Braces typify this point in spades.
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • #67
                Originally posted by Pooka1 View Post
                And so many kids have worn the brace needlessly.
                These are counted as brace successes by those who do not understand the need for controls. They are not successes, they are failures because they are unnecessary treatment. The doctor's oath is to first do no harm. They are missing that mark with much of brace wear for lack of controlled studies.
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • #68
                  I should to read all this thread, it seems I have nothing clear.. I thought that the scoliosicore was always presented as the extremely accurate test that parents need to does in order to take decissions..

                  Comment


                  • #69
                    Originally posted by Pooka1 View Post
                    They need to calibrate the test with known outcomes. Then they apply the formula to unknown outcomes.

                    All tests need to be calibrated.
                    Yes, all tests need to be calibrated. The problem is, they took samples from adults, like me, with known outcomes. FALSE. My outcome is changing and the makers of this test aren't even aware of people like me. They go with what x-rays they were given at the time they collected our DNA and categorize according to that.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

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                    • #70
                      SALT LAKE CITY ...? Is the same?? http://www.scoliosis.org/forum/showt...c-Test-for-AIS

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                      • #71
                        I believe that is where these researchers are located.
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

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                        • #72
                          Would be true that about those 3 or 4 men??

                          Comment


                          • #73
                            What 3 or 4 men? I'm sorry I didn't look at the link. Are you referring to the researchers? If so, at least some of them came from the Twin Cities Spine Center in Minneapolis, MN, USA. Dr. Ogillvie for sure.
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • #74
                              Rorher, I was referring to that

                              Originally posted by Pooka1 View Post
                              I think it has been shown that between 3 and 4 men fathered all the children in the Mormon church.
                              ...

                              Comment


                              • #75
                                The study I was in was not the one conducted among those in the Salt Lake City area. However, unbeknownst to the people at Axial Biotech I am of Mormon descent and my scoliosis came down through that side of the family. They didn't ask that question on the questionnaire. I didn't know it at the time, anyway. My father was a practicing Mormon and I was raised that way, although am no longer. I found out my whole lineage (because they do geneology) after I did the DNA swab. My dad went blind and was dying and he asked me to read a bunch of papers. It was all geneology and it went all the way back to the beginning of "The Church" which kind of weirded me out a little. I'm not putting down Mormon's, as I still have Mormon family. I just didn't realize that there was a Mormon "ethnicity" like there is a Jewish "ethnicity". You don't have to be Jewish to be Jewish. I hope you understand what I'm saying...
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

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