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  • #91
    Originally posted by rohrer01 View Post
    By having a scolicore done, there is NO RISK to the patient except for the risks involved with any blood draw.
    It's a spit test.
    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


    • #92
      Originally posted by flerc View Post
      in any case I would have asked about the Organization supervising that test, periodic test and so on, but not about if the right test was done or not.
      Scientific fraud is relatively rare. Scientists are the good guys and traffic in intellectual honesty as a rule.
      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


      • #93
        Originally posted by Pooka1 View Post
        Scientific fraud is relatively rare. Scientists are the good guys and traffic in intellectual honesty as a rule.
        Science and moral are not the same. There not exists such thing as elites. Mengele as I know was a scientist, and of course private companies should to be controlled. Test should to be for every kind of products regardless if scientists were working on it or not.

        Comment


        • #94
          Originally posted by rohrer01 View Post
          How do you know that it wasn't properly tested? I don't ever recall reading that young patients with small curves were used in collecting the DNA samples used in developing this test. I guess that's why I made the assumption that I did about ulterior motives (money making). It's my understanding that they did extensive testing before releasing the test for public use. Also, by trying the test out on the public, they continue to collect data that will either confirm or negate that accuracy of this test. By having a scolicore done, there is NO RISK to the patient except for the risks involved with any blood draw. Data is being collected on all kinds of medical devices and drugs even after release to the public.

          Treatment is ultimately decided upon by a collaboration between the doctor, parent, and patient (hopefully) and not based solely on the results of this test. For example, if a patient tests really high for progression, the parent may still want to brace their child. The scoliscore may indicate that the patient's scoliosis will progress regardless of bracing, but that does not mean that the parents and doctors should do nothing. Exercise and diet are always good for everyone, so this should always be implemented in any treatment plan. Bracing may be used to try to hold a curve until the child has had enough growth time to gain most the their skeletal maturity before surgery instead of having surgery before growth is complete or near complete. Sometimes, surgery may not be avoidable in adolescents with very low risser if they are progressing very rapidly. Scoliscore is just a tool to help evaluate the risk of progression. It doesn't take the place of treatment.

          On the other hand, if the patient test really low for possible progression, they should still be monitored. If they do progress, bracing may still be considered. BUT, if progression is very slow and the child never reaches, say 30* (for the sake of argument), why put them through the pain of a brace? This doesn't mean that the physician and parents can't choose bracing as an option. It just might mean that there may not be a need for it. There may not be a need for super frequent x-rays, saving them from exposure. If the parent isn't comfortable with that. They certainly can ask for more strict monitoring despite a low Scoliscore.

          In the end, it's just a tool. It can be used in deciding treatment options, but doesn't have to be considered when deciding treatment.
          Well said, rohrer01. Nobody is (hopefully) using this test as their sole deciding factor when it comes to surgery, bracing or any other treatment. So it is hard to imagine these folks could have a vested interest in any one particular outcome. I would also imagine that if one only wanted to get rich, they could find a much more lucrative way to do it. As Linda explained, they used pretty standard models when compiling their database. I see no red flags here.
          mariaf305@yahoo.com
          Mom to David, age 17, braced June 2000 to March 2004
          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

          https://www.facebook.com/groups/ScoliosisTethering/

          http://pediatricspinefoundation.org/

          Comment


          • #95
            Asking for the kind of test used to measure the reliability of this product (as I did and nobody was replying), or about the Organism supervising that test (why not?) or about any other procedure used in other predictive score models on other areas, has nothing to do with what you are saying. Try to understand better before comment about what others said.

            Comment


            • #96
              Originally posted by Pooka1 View Post
              It's a spit test.
              I should have known, since my family and I gave them spit and not blood. =) ...That's a duh moment on my part!
              Be happy!
              We don't know what tomorrow brings,
              but we are alive today!

              Comment


              • #97
                Originally posted by debbei View Post
                My 3 kids and I were all included in this study. My kids all have small curves, I had the gigantic ones

                Jesse, my middle son, had such a great sample that the Alial people had him send additional DNA 2x. They wouldn't tell me what was so 'special' about his vs. 2 siblings, but they said it was very 'exciting.' The 2nd time they even sent him a gift card.

                I've said this here before--maybe even on this thread--that I wonder if he has the genes that will make him progress due to their interest in his samples.

                He's 19 yrs old now and I will continue to watch him.
                That's interesting. I wonder if they would have wanted my daughter's DNA for the study had she been seen by an SRS doctor? She has a small curve and is grown now, but not at the time.
                Be happy!
                We don't know what tomorrow brings,
                but we are alive today!

                Comment


                • #98
                  Originally posted by flerc View Post
                  Asking for the kind of test used to measure the reliability of this product (as I did and nobody was replying), or about the Organism supervising that test (why not?) or about any other procedure used in other predictive score models on other areas, has nothing to do with what you are saying. Try to understand better before comment about what others said.
                  I'm not sure what regulatory agency oversees the test. Maybe Linda knows. I would guess it would be the AMA (American Medical Association), but I could be wrong. I think maybe you are getting frustrated with our answers because, at least for myself, we are not crystal clear on what exactly you are asking.
                  Be happy!
                  We don't know what tomorrow brings,
                  but we are alive today!

                  Comment


                  • #99
                    Originally posted by Pooka1 View Post
                    Scientific fraud is relatively rare. Scientists are the good guys and traffic in intellectual honesty as a rule.
                    I don't know if I agree there. I've heard of cover-ups, especially in pharmaceuticals. People are still people and scientists aren't immune to greed and dishonesty because they have Ph.D. or M.D. behind their names. I don't have any reason to doubt THESE people, though. They have nothing to gain by putting out a faulty test.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • Originally posted by flerc View Post
                      So if this would be the case of the scolioscore, it should have to be tested with samples (having and not scoliosis as I asked before) before use it. I don’t know what kind of calibration may need, but anyway, that kind of test should have to be done and constantly should to be tested.
                      Linda answered the question you asked before. I believe I answered this one about why people without scoliosis would not be a good "control" for this type of study. I'm trying really hard to figure out what it is that you want to know that I am missing. It may be a language barrier.
                      Be happy!
                      We don't know what tomorrow brings,
                      but we are alive today!

                      Comment


                      • Originally posted by flerc View Post
                        Try to understand better before comment about what others said.
                        I was actually commenting on what rohrer said, which I understood perfectly. I'm not trying to attack you, flerc - I hope you don't read that tone into my posts - I think as someone said, there may be a bit of a language barrier which I think we are all, yourself included, trying to work around as best we can. However, nobody here seems to understand exactly what you are asking and maybe that's why our answers are not addressing your concerns.
                        mariaf305@yahoo.com
                        Mom to David, age 17, braced June 2000 to March 2004
                        Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                        https://www.facebook.com/groups/ScoliosisTethering/

                        http://pediatricspinefoundation.org/

                        Comment


                        • Originally posted by rohrer01 View Post
                          I don't know if I agree there. I've heard of cover-ups, especially in pharmaceuticals. People are still people and scientists aren't immune to greed and dishonesty because they have Ph.D. or M.D. behind their names. I don't have any reason to doubt THESE people, though. They have nothing to gain by putting out a faulty test.
                          I agree on both points. First, that in this case there doesn't seem to be anything to be gained by these folks by putting out a faulty test. And second, I generally trust doctors, surgeons and other medical professionals a lot more than those in pharmaceuticals, whom I really don't trust much at all.
                          mariaf305@yahoo.com
                          Mom to David, age 17, braced June 2000 to March 2004
                          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                          https://www.facebook.com/groups/ScoliosisTethering/

                          http://pediatricspinefoundation.org/

                          Comment


                          • Originally posted by mariaf View Post
                            I was actually commenting on what rohrer said, which I understood perfectly. I'm not trying to attack you, flerc - I hope you don't read that tone into my posts - I think as someone said, there may be a bit of a language barrier which I think we are all, yourself included, trying to work around as best we can. However, nobody here seems to understand exactly what you are asking and maybe that's why our answers are not addressing your concerns.
                            Ok Mariaf, I said that because you approved what Rorhrer was saying to me and I really don’t agreed with her reply, because as I said then, I was not criticizing anything or affirming anything, I was only asking to know about the approval procedures around the scolioscore. Surely it was a misunderstanding, maybe because a bit of a language barrier or because I was not expressing the concepts in the right way.

                            Certainly I have never paid before so much attention to the scolioscore history, only about the change that would imply in the scoliosis treatment, so I was not sure about anything related with it. When it begun to be clear for me that effectively it is a predictive score model, I wanted to know if the steps required to use such kind of models were satisfied and if the kind of data was the same as I was thinking should to be.
                            Rorhrer corrected me when she said that the samples must to be conformed with people having all of them scoliosis. So then I asked if effectively, the same kind of data used to constructed it, was used for test it, as it occurs in every predictive model.. this test is the way to be sure about how much reliable is the model, that is, how much sure may be someone about the outcome that the model may give for each sample. It seems I was not clear enough doing that question.
                            When Linda answered it, it was clear for me that A.B. declared to have complied with those (basic) steps required.

                            But when someone is thinking in acquire a predictive score model, before buy or approve their use, they should to be sure about how good it is. Nobody as I know refuse to does a test to know that, because in the construction of the model were involved recognized or prestigious people, as may be the people of that Company.
                            So I was asking what kind of test did the Government before approving the use of the scolioscore. It might have done for me in 2 ways: If people of Goverment were involved in some way in the Project, having access to the data used, they could have corroborated the validity of the test done.
                            Otherwise they should to do another test, with other data (but of the same kind). If that was the case, was the reliability (percentages of correct outcomes) the same as the determined by the Company? How many samples were used?

                            Well, that’s were the kind of questions I wanted to do about the scolioscore.. and I have more, but I don’t know if 'm being now clear enough. Please, let me know if not.

                            Comment


                            • Originally posted by rohrer01 View Post
                              Linda answered the question you asked before. I believe I answered this one about why people without scoliosis would not be a good "control" for this type of study. I'm trying really hard to figure out what it is that you want to know that I am missing. It may be a language barrier.
                              Yes Rorher, as I said recently to Mariaf, I understood both answers. I hope you may understand now what I said.

                              Comment


                              • Flerc,
                                If you want accurate information it is always best to go to the source rather than asking others. Here's the web address for Axial Biotech. Maybe you can direct some of your questions to them if they aren't directly answered on their website.

                                http://www.axialbiotech.com/
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

                                Comment

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