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Thread: The Axial Biotech Test is Here

  1. #151
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    What lucky! I believe are very different and not only in the kind of the arguments.. I see 0 charisma in all those empty personages.. maybe Captain Picard the only exception but anyway.. never more as an Enterprise with Captain Kirk, Spoke, Dr. Mc Coy.. we would need people of those times..

  2. #152
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    Quote Originally Posted by hdugger View Post
    I absolutely get that. There is no good solution. We're so desensitized to the options after awhile that we can sit around and rationally talk about fusing a spine or wearing a brace, but, really, these are solutions out of some bygone medical era. They might as well be pounding holes in skulls to let the demons escape.

    I know I've quoted it a few times, but Lewis Thomas really nails where we are in scoliosis treatment. What he says, in a nutshell, is that until medicine actually understands a disorder, they have these incredibly expensive, intrusive, archaic methods of dealing with the symptoms which in no way cure the disorder. Once they understand a disorder, the solution is elegant and cheap and actually fixes the problem.

    We are definitely in the "don't understand the first thing about it" phase, because the available treatments for scoliosis are just about the most expensive, intrusive, archaic medical treatments around.

    But, what are you going to do?

    Hdugger, certainly this Lewis Thomas was a wise man.
    May we do something? I believe that as in other situations, people affected may do something but unfortunately only jointly.

  3. #153
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    Quote Originally Posted by leahdragonfly View Post
    Flerc,

    Why the government though? They have no medical training. They can barely manage most country's finances. Leave the medical issues to the experts, the doctors and researchers. The government can not do everything for everyone and should not be expected to.
    Certainly some governments may be good an others bad, so is difficult to trust in governments. But someone is needed to do the controls. . More of something as civil power is needed.

    I only may trust in scientist’s works, but if there are developed inside scientific environments such as Universities or some special Institutes. But when the scientists works in Companies, in something that will give great profits to the company, not always the scientific environment has something to do. Also we may say that there is something as a grey zone in some products which are not clearly scientific or clearly technical..

    I have not any doubt that the Fermat theorem was finally demonstrated and as some complex encryption algorithms based on that famous theorem. But I’m not a priori so much sure of the reliability of some Security Systems using those algorithms. I should to test it or trust in who tested it before.

    So many things used in medicine not necessarily emerge from a Scientific environment, as we may say about a device. Even products as some predictive score models may be done for professionals as engineers with enough concepts about statistics and Data Mining.

    I’m not sure yet about the test done to the scoliscore. I’m still reading this link posted by Kevin_Mc some time ago. . it seems to talk about this. www.axialbiotech.com/files/fda_approval.pdf

  4. #154
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    FDA believes that clinical laboratories that develop such tests are acting as manufacturers of medical devices and are subject to FDA jurisdiction under the act. However, FDA recognizes that the use of in-house developed tests has contributed to enhanced standards of medical care in many circumstances and that significant regulatory changes in this area could have negative effects on the public health.

    Certainly I not see which could have been the negative effect (except spending some dollars) if FDA would have supervised the test or doing another one. If we were talking about drugs, the tests surely may be not so simple, and probably not so much reliable anyway (it seems that the real test is done in consumers).. but in this case, if AB used n adults to do that test and the reliability obtained was about the 99%, the FDA also might find n adults with similar curves and pay for the scolioscore test for all of them and measure the reliability to know if it was the same.

  5. #155
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    Flerc,

    I guess I am confused--you seem to have some objection to the Scoliscore, as you have posted over and over that it should be checked, etc, so may I ask, what is your concern here? One could make the same objections about bracing for example.
    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

  6. #156
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    Quote Originally Posted by leahdragonfly View Post
    Flerc,

    I guess I am confused--you seem to have some objection to the Scoliscore, as you have posted over and over that it should be checked, etc, so may I ask, what is your concern here? One could make the same objections about bracing for example.
    Actually, there is more high quality data about Scoliscore than there is for bracing despite the decades of research on the latter.
    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."

  7. #157
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    Very true Sharon!

    I think the Scoliscore is a very important addition to the physician's toolkit for scoliosis. The more predictive data they have for risk of progression, the better in my opinion. I would have my son tested in a hot second if he fell within the testing guidelines. Unfortunately he does not.
    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

  8. #158
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    Quote Originally Posted by leahdragonfly View Post
    Very true Sharon!

    I think the Scoliscore is a very important addition to the physician's toolkit for scoliosis. The more predictive data they have for risk of progression, the better in my opinion.
    I wholeheartedly concur!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #159
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    Quote Originally Posted by leahdragonfly View Post
    Flerc,

    I guess I am confused--you seem to have some objection to the Scoliscore, as you have posted over and over that it should be checked, etc, so may I ask, what is your concern here? One could make the same objections about bracing for example.
    Yes leahdragonfly, of course you may ask me that.
    Certainly I also made some objections about braces, but not about the test (not so simple and quick to do), but about how they are used.

    My first interest about the scolioscore was when I have read some time ago about the way that it would change the scoliosis treatment. I participated so much in this thread http://www.scoliosis.org/forum/showt...-to-Scoliscore that I visited again yesterday and saw the last post and the AB article.

    But regardless the change that may does or not, I believe that would be really great to know which genes are failing provoking the curve. And I believe that would be good for everyone, not only kids or teens, although of course the biggest aid would be for them. One of the first questions I did in this forum was if genes only are a cause until growth finish or may remain as a cause also then. I’m not sure about that and even if genes may not be modified, if we know the kind of impact they are provoking, maybe some actions may be taken to counterattack the effect of that failure. But of course we need to be sure about what genes really are guilty.

    If I have posted over and over as you said (in fact at first I was asking about how it was) that it should be checked in a more credible (and also fast) way, it was mainly because it seemed it was not clear what I was saying or why I was saying that. If we would have the same perspectives about what is needed to assure a good test, surely I would have found a more brief way to well found what I said, also about the risks of using a model with a reliability different that wich seems to have, although I hope it would not be the case. And I not see ilogic that people absolutely trust in this test.. I think is something really arguable what anyone may believe.. and certainly, I hope a low score for your son.
    Last edited by flerc; 06-27-2012 at 01:29 AM.

  10. #160
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    Quote Originally Posted by leahdragonfly View Post
    I think the Scoliscore is a very important addition to the physician's toolkit for scoliosis. The more predictive data they have for risk of progression, the better in my opinion.
    As rohrer01 said, I wholeheartedly concur as well!
    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/

  11. #161
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    Quote Originally Posted by flerc View Post
    My first interest about the scolioscore was when I have read some time ago about the way that it would change the scoliosis treatment. I participated so much in this thread http://www.scoliosis.org/forum/showt...-to-Scoliscore that I visited again yesterday and saw the last post and the AB article.
    The first post on that thread is stem to stern paranoid conspiracy theory and misinformation.

    You might just ignore it if you want to get the real story.
    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."

  12. #162
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    Quote Originally Posted by Pooka1 View Post
    The first post on that thread is stem to stern paranoid conspiracy theory and misinformation.

    You might just ignore it if you want to get the real story.
    My posts in that thread and in this was only based on what I (at least believed to) know or inferred by myself when I was affirming something, or asking when I was not sure about something. My interest in this thread in knowing the real story was only because I wanted to know how much credible is the reliability declared and I believe I know now all what I need to know in order to do a right evaluation and of course, my criteria to evaluate this may be different for you, for me.. everyone may have different criterias for that and I was not trying to changing that fact.

  13. #163
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    Quote Originally Posted by flerc View Post
    My posts in that thread and in this was only based on what I (at least believed to) know or inferred by myself when I was affirming something, or asking when I was not sure about something. My interest in this thread in knowing the real story was only because I wanted to know how much credible is the reliability declared and I believe I know now all what I need to know in order to do a right evaluation and of course, my criteria to evaluate this may be different for you, for me.. everyone may have different criterias for that and I was not trying to changing that fact.
    People are entitled to their own criteria/opinions. They are NOT entitled to their own facts. That thread is a symphony of misinformation and paranoid conspiracy as a matter of FACT. Not that I am saying you need to worry about facts if you don't want to. You don't have to care about reality. Many people clearly do not.
    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."

  14. #164
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    Read through the recent posts here as well as the article Linda posted. You all are correct, that the scoliscore is only meant to be used as a tool for doctors to use. It's a risk assessment for kids who already have scoliosis. In the article Linda posted and the original article it is intended to reduce the amount of x-rays and doctor's visits for kids with a low score, i.e. <50. For kids with a score 50-180, continued monitoring will be important. For kids >180, close monitoring is definitely indicated and some doctors/families might want to look seriously at bracing/stapling/etc... This is the same thing that most prediction tools are trying to do. The article Linda posted compares the scoliscore to the most common method of Lonstein. To date, it was the largest and 'best' study to predict progression and uses risser, cobb, and age at detection (I think). We used it in our TR study to assess risk. But like what has already been mentioned, it is only predicting the likelihood of progressing >40 by skeletal maturity. And we all know that kids with scoliosis become adults with scoliosis. Nonetheless, the scoliscore paper and company mission overall seems very sincere.

    Flerc, you make a good point about the genes. This is one HUGE thing the scoliscore test discovered. We now have a list of 37 (or was it 51) genes to look at. It still doesn't give any indication of a trigger. But it does provide some insight into some things that might drive the curve. The next step is to track those genes and find out what proteins they are (or are not) making. What is the expression of those genes. There is a tool on pubmed where you can look up genes and find out what is known. From a muscle point of view, I think I remember there being a calcium transporter gene in there and other somewhat related genes. But overall, nothing was really standing out to me from the quick search I did a while back.

    Looking back at the recent article, they show that the scoliscore and Lonstein method for progression risk come out with different results. However, they don't show the accuracy of either method. This is weird because it is a retrospective study. Presenting the accuracy would be extremely important to include. Maybe this data is buried somewhere in the discussion. If I had reviewed this paper, this is information I would have wanted to see.

  15. #165
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    Quote Originally Posted by Kevin_Mc View Post
    Looking back at the recent article, they show that the scoliscore and Lonstein method for progression risk come out with different results. However, they don't show the accuracy of either method. This is weird because it is a retrospective study. Presenting the accuracy would be extremely important to include. Maybe this data is buried somewhere in the discussion. If I had reviewed this paper, this is information I would have wanted to see.
    I suspect it will come out as a separate paper when all the patents have unequivocally reached maturity.

    It continues to floor me how someone can look at the Scoliscore effort and not conclude those guys are saints. I blame the pervasive war on sceince that is constantly being conducted in the US that ranges from evolution denial to old earth denial to climate change denial and includes denial of any fact that folks simply don't want to accept for emotional reasons. We are the laughing stock of the world. Of thirty some countries, only Turkey has a more ignorant populace on the fact of evolution. We are losing out prominent place in science on the world stage and looking like idiots.
    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."

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