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Changes in scoliosis treatment due to Scoliscore

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  • Maybe they had a tight business case and maybe they didn't. The premise sounds logical and they did prove their case. They invested in the idea by eating the costs. Maybe until the cost of the genetics comes down, people just won't pay for a test that determines if they won't reach 40* given 30* is considered protective of future progression. Everyone involved, the researchers, surgeons and surgeon-investors, are all the good guys. They have a very useful tool for ~75% of AIS kids. I am very unclear why it can't be profitable eventually if the genetics costs come down.
    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


    • Originally posted by sjmcphee View Post
      So why are investors not interested in AB and Scoliscore if it is all its supposed to be?
      If investors aren't interested in Scoliscore, then that's enough to set off my bullshit meter.
      I'd like to know the answer to that. It's very surprising to hear given what they have shown. Kids have been spared bracing already. That's priceless.
      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


      • AB is not a company listed on any stock exchange, I made a mistake in my last post.
        I kind of wonder why it isn't though. They must have their reasons I guess.
        They must have been looking for investors years ago and thats why I got it mixed up.
        Axial Biotech, Inc. is a privately held, venture-backed company founded in 2002 by a group of internationally recognized spine surgeons and geneticists.

        Comment


        • Originally posted by LindaRacine View Post
          My understanding is that they used a very large database of adults on whom they had medical history. Then, they asked adults with scoliosis, whose outcomes were known, to add their genes to the database.
          That makes sense. It's just not perfectly clear in the article. But it's ridiculously hard to think of and include every little fact that someone might come up with.

          Originally posted by LindaRacine View Post
          The validation charts are very impressive.
          Yes, their validation curve is very tight.

          Originally posted by LindaRacine View Post
          For the tests that have been done to date, the only patients whose predictions have failed (I.e., the patient had a low score, but their curve(s) progressed significantly), have all had an underlying, unreported issue (e.g., undiagnosed congenital vertebra).
          Ahh... I see. So that patient (which you can find in the article, i.e. low score but still had progression/surgery) had an underlying issue. That's not mentioned in the paper but is very good info. I wonder why they kept that data point in the model.

          Originally posted by LindaRacine View Post
          But it appears that they're going to stick with it, even though they suspect there won't be any more money coming from investors, because they feel there's a huge benefit to society.
          That's so nice to hear. Not that they won't be profitable but that they'll continue the work because it's a good thing to do. I'm reminded of the Jonas Salk quote ~ "You can't patent the sun". I'm sure Scoliscore has a patent, but at least money does not seem to be the current driving factor which gets to the heart of what Salk was saying. Do things for the good of humanity.

          Originally posted by sjmcphee View Post
          So why are investors not interested in AB and Scoliscore if it is all its supposed to be?
          If investors aren't interested in Scoliscore, then that's enough to set off my bullshit meter.

          - Scott
          Originally posted by Pooka1 View Post
          Maybe they had a tight business case and maybe they didn't. The premise sounds logical and they did prove their case. They invested in the idea by eating the costs. Maybe until the cost of the genetics comes down, people just won't pay for a test that determines if they won't reach 40* given 30* is considered protective of future progression. Everyone involved, the researchers, surgeons and surgeon-investors, are all the good guys. They have a very useful tool for ~75% of AIS kids. I am very unclear why it can't be profitable eventually if the genetics costs come down.

          I would imagine investors are hesitant for a diagnostic tool at this time. Particularly in the US. In the long run, investors and inventors/researchers are frequently driven by different motives.

          Comment


          • Originally posted by Pooka1 View Post
            I'd like to know the answer to that. It's very surprising to hear given what they have shown. Kids have been spared bracing already. That's priceless.
            I don't know about all surgeons, but there are definitely a lot who have embraced it. I think the price is very frightening to most. They haven't done a very good job of getting the facts out there (only one patient's family has ever paid full price for the test). Families who make under $450,000 per year don't have to pay full price, and most have to pay nothing. And, most major insurance plans are covering it. The best part is that AB does all the insurance work, so the MD's office doesn't have to worry about getting approval.
            Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
            ---------------------------------------------------------------------------------------------------------------------------------------------------
            Surgery 2/10/93 A/P fusion T4-L3
            Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

            Comment


            • ScoliScore for younger kids/JIS

              I am curious if anyone knows, Linda maybe you...I have heard of the scoliscore being administered in kids younger than 9, who by definition don't have AIS (they have JIS). Is this very common practice, and is it considered accurate?

              I would be very interested in having my kids tested, but I don't think they qualify. Leah was diagnosed with JIS at age 6, but is 9 now. Her curve got to 30 degrees before VBS, however, so I am not sure if she is beyond the criteria. My son is only 6, but he is showing signs of an extremely mild curvature. At this point our pediatrician is not inclined to repeat an x-ray on him, as he was measured with an approx 5 degree curvature 3 years ago. It would be wonderful to have a scoliscore for him, but again I think he is outside the criteria. Do you have any info about how the test is being used currently?

              Thanks,
              Gayle, age 50
              Oct 2010 fusion T8-sacrum w/ pelvic fixation
              Feb 2012 lumbar revision for broken rods @ L2-3-4
              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
              2010 VBS Dr Luhmann Shriners St Louis
              2017 curves stable/skeletely mature

              also mom of Torrey, 12 y/o son, 16* T, stable

              Comment


              • Hi Gayle....

                I haven't heard that, but it wouldn't surprise me if AB tried to see if they could confidently predict someone under 9. As far as I know the test is limited to:

                Caucasian females with a primary diagnosis of AIS
                Over the age of 9 who are deemed “skeletally immature”
                With a curve between 25 and 40°

                I recently had a patient who was Asian, and called to ask if they wanted to give it a shot. They said to send the sample in, as they've found patients who describe themselves to be Asian, but who, when tested, turn out to be considerably less than 100% Asian. (Unfortunately, since the patient who came to see us was from Shanghai, she was, indeed, 100% Asian.)

                Leah, if you want me to approach AB on your behalf, I'd be happy to do that. I'd just need a little summary on each one.

                --Linda
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                Comment


                • Originally posted by LindaRacine View Post
                  I don't know about all surgeons, but there are definitely a lot who have embraced it. I think the price is very frightening to most. They haven't done a very good job of getting the facts out there (only one patient's family has ever paid full price for the test). Families who make under $450,000 per year don't have to pay full price, and most have to pay nothing. And, most major insurance plans are covering it. The best part is that AB does all the insurance work, so the MD's office doesn't have to worry about getting approval.
                  A scary aspect of all this is that chiros, including at least some of those at CLEAR, are offering patients the test and using whatever the results are to recommend treatment. Low score - a low level of treatment, middle/high score, intensive treatment. To the extent that is going on, I think AB should be concerned. Were I AB, I would not let chiros use the test because they have no way to address the results whatever they might be.

                  Do you know why AB lets chiros offer the test? I think it should be only surgeons or researchers (i.e., trained people).
                  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


                  • Originally posted by Pooka1 View Post
                    A scary aspect of all this is that chiros, including at least some of those at CLEAR, are offering patients the test and using whatever the results are to recommend treatment. Low score - a low level of treatment, middle/high score, intensive treatment. To the extent that is going on, I think AB should be concerned. Were I AB, I would not let chiros use the test because they have no way to address the results whatever they might be.

                    Do you know why AB lets chiros offer the test? I think it should be only surgeons or researchers (i.e., trained people).
                    What are surgeons recommending to do?

                    Comment


                    • Originally posted by flerc View Post
                      What are surgeons recommending to do?
                      Well, the ones who use Scoliscore are choosing NOT to brace some kids with a score <41 as we have seen in those testimonials. The other thing they might be doing is to get kids in the VBS queue if they score >150. The kids 41 < x < 150 are probably still consigned to bracing.

                      The main bottom line is that ~75% of kids will not require treatment and they can now identify that group. That is huge. I'm sure you realize there are now independent lines of evidence that most braced kids were braced needlessly, mainly due to their curves not progressing on their own but also due to brace failure.
                      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


                      • Originally posted by Pooka1 View Post
                        A scary aspect of all this is that chiros, including at least some of those at CLEAR, are offering patients the test and using whatever the results are to recommend treatment. Low score - a low level of treatment, middle/high score, intensive treatment. To the extent that is going on, I think AB should be concerned. Were I AB, I would not let chiros use the test because they have no way to address the results whatever they might be.

                        Do you know why AB lets chiros offer the test? I think it should be only surgeons or researchers (i.e., trained people).
                        Don't know, but I'll ask.
                        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                        ---------------------------------------------------------------------------------------------------------------------------------------------------
                        Surgery 2/10/93 A/P fusion T4-L3
                        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                        Comment


                        • Originally posted by Pooka1 View Post
                          Well, the ones who use Scoliscore are choosing NOT to brace some kids with a score <41 as we have seen in those testimonials. The other thing they might be doing is to get kids in the VBS queue if they score >150. The kids 41 < x < 150 are probably still consigned to bracing.

                          The main bottom line is that ~75% of kids will not require treatment and they can now identify that group. That is huge. I'm sure you realize there are now independent lines of evidence that most braced kids were braced needlessly, mainly due to their curves not progressing on their own but also due to brace failure.
                          If I would be the father of a little kid with a low scolioscore value, I would not be worry for the innecessary treatment that could do, but for the possibility that the curve might increase regardless what the scoliosicore may say.. I don't want to imagine what could do a father if after a time, without any control and treatment, returns to the same surgeon an heard something like Oh.. it's really strange, but you know that nothing is perfect.. it's to late now for VBS or brace, but take it easy.. is not late for fusion!. Really I don't want to know what might happen then..

                          Comment


                          • Originally posted by flerc View Post
                            If I would be the father of a little kid with a low scolioscore value, I would not be worry for the innecessary treatment that could do, but for the possibility that the curve might increase regardless what the scoliosicore may say.. I don't want to imagine what could do a father if after a time, without any control and treatment, returns to the same surgeon an heard something like Oh.. it's really strange, but you know that nothing is perfect.. it's to late now for VBS or brace, but take it easy.. is not late for fusion!. Really I don't want to know what might happen then..
                            There is no good evidence bracing works. And what evidence there is has HUGE error bars making prediction in any particular case impossible.

                            If there was a 1% chance of bracing working, would you make your child wear the brace?

                            What if there was only a 0.1% chance? What about 0.00001%?

                            I have come to the unwelcome conclusion that there are some parents who would brace for ANY finite chance.

                            I would not be worry for the unnecessary treatment that could do,
                            I have noticed some parents WHO DON'T HAVE TO WEAR THE DAMN BRACE tend to make noises like this. It seems very ethically dicey given the fact case surrounding bracing in my opinion.
                            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


                            • I think I may have interested Ken Ward in joining the forum and commenting on this subject. Here's his response to my question:

                              AB has tried to act responsibly in how we offer Scoliscore:

                              Axial only promotes the test to Scoliosis "experts".

                              We require the Cobb angle and the ordering clinician's certification that other causes of scoliosis have been ruled out as a prerequisite for any test- this requirement means that we tend to work with centers with greater experience.

                              We inservice each site that has ScoliScore sample collection kits before they offer the test and we try to keep a dialog going as samples come in and results go out.

                              Having said all that, we cannot stop chiropractors (or other non-surgeon or non-MD providers) from ordering a test or treating scoliosis if they have been granted privileges to order medical tests and treat scoliosis by their home state.

                              The Axial team has observed that some non-surgeon users provide truly exceptional support and care for their patients. Many actually co-manage patients with excellent surgeons and orthotists. Many understand the strengths and limitations of ScoliScore very well, and some chiropractors automatically refer all high ScoliSore patients to a surgeon for a consultation. While most chiropractic approaches to mild and moderate scoliosis management are unproven and some seem potentially harmful-- unfortunately, the track record is not much better for the mainstays of "traditional" AIS management.

                              The physicians at Axial Biotech hope that appropriate use of ScoliScore will lessen unnecessary office visits, radiographs, bracing, and "medicalization" of an affected teen's life wherever mild AIS patients are seen. It is important that we try to educate all practitioners treating AIS. Chiropractors do play a large role in scoliosis care. For instance, we observed that approximately 30% of the 10,000 research study patients collected by Axial Biotech from leading SRS surgeon practices report that they tried chiropractic care at some point, often while they were also under the care of a surgeon expert. I am certain that many other mild AIS patients only see chiropractors.


                              He has a good point about a lot of patients seeing chiropractors. Unfortunately, a lot of kids get referred up to specialists because a curve has been detected. If we saw even a small percentage of those patients in clinic, we'd have no time for anything else. What we want, and what is best for society, is for kids who have low scores to not get referred up. Unfortunately, as you know, chiropractors are going to overtreat the kids with low scores. But, perhaps that's better than having them get referred up, where they'll likely be x-rayed at least every 6 months.

                              --Linda
                              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                              ---------------------------------------------------------------------------------------------------------------------------------------------------
                              Surgery 2/10/93 A/P fusion T4-L3
                              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                              Comment


                              • Originally posted by Pooka1 View Post
                                There is no good evidence bracing works. And what evidence there is has HUGE error bars making prediction in any particular case impossible.

                                If there was a 1% chance of bracing working, would you make your child wear the brace?
                                And if there was a chance of 10%?

                                Originally posted by Pooka1 View Post
                                What if there was only a 0.1% chance? What about 0.00001%?
                                And .......................what about 0%?

                                Originally posted by Pooka1 View Post
                                I have come to the unwelcome conclusion that there are some parents who would brace for ANY finite chance.
                                Maybe they suppose is the only way to avoid fusion and there is not enough knowledge to give a reasonable estimation about odds.. You should to say them which would be the real chance they have!


                                Originally posted by Pooka1 View Post
                                I have noticed some parents WHO DON'T HAVE TO WEAR THE DAMN BRACE tend to make noises like this. It seems very ethically dicey given the fact case surrounding bracing in my opinion.
                                What I said is making noise for you? I'm sure you know enough about Odds and Statistics, so you know that you may estimate when it will happens knowing the margin error of the scolioscore and the number of cases per year.
                                But surely it would be few cases.. nothing important, no? You will not be the surgeon giving that new.. Or the margin error is 0? Are you sure about that? It should to be a public information with all the data leading to that conclusion. Where those parents may see it?

                                Comment

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