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Thread: The Axial Biotech Test is Here

  1. #166
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    I might agree that thread is a symphony of misinformation and conspiracy but for other different reasons than you. But I just said all I had to say about that in that thread, as I asked and comment all I wanted in this

    Quote Originally Posted by Pooka1 View Post
    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.
    If you are saying me that because what said in that thread, you perfectly know what I think about that. You and I were the main participants (more posts) and if you have interest in say something about that, you should to do it in this thread. I see out off topic to do that here. If I mentioned it was because Leahdragonfly not understood my interest in this thread.

    But if you are saying me that because I was saying in this thread, tell me which are the facts I’m refusing to see. It’s something in order to improve the criteria for trusting in the reliability of the scolioscore?. Maybe I missed something. I heard you and I’m not being ironic.
    Leahdragonfly. I hope you realize now why I not stop to post in this thread.

  2. #167
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    Now that we have established progression probablilty with the Scoliscore, what I would be most interested in next is the trigger. This intrigues me from a molecular biologic point of view because a person with a perfectly healthy spine can carry these same "defective" genes, if you will, and never develop scoliosis. Is there a "trigger gene"? If I were fortunate enough to be on this team of researchers, I would be looking for a group of genes or single gene or stretch of DNA that ONLY shows up in people with scoliosis. I would want to know if the trigger is genetic, epigenetic, strictly environmental or the like. I would like to be able to administer this test to kids as a routine screening BEFORE they develop scoliosis. But, unfortunately, we are not at that point, ...yet.
    Last edited by rohrer01; 06-29-2012 at 07:17 PM. Reason: ;-)
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  3. #168
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    Quote Originally Posted by Pooka1 View Post
    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.
    It continues to floor me how someone may deny the importance of right procedures in test products.. even if they are done by saints. That seems to happen here, because if you know that they were right done instead of criticize who thinks in that way, you have should to showed the proofs about that and you didn’t. And say what you think in the face instead of talking about 'someone, people folks..'.

  4. #169
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    Quote Originally Posted by Pooka1 View Post
    I suspect it will come out as a separate paper when all the patents have unequivocally reached maturity.
    Hopefully. They do discuss the accuracy. Or rather, acknowledge that they aren't reporting the accuracy but showing how the test might be used clinically, i.e. risk classification. Their concern with Lonstein is that they classify more kids as moderate to high risk than the scoliscore which increases the kid's/parent's stress level. However, and they mention this in the text, the Lonstein paper is meant to predict progression of >5° from the time of detection. So these two tests are measuring two very different things. It's possible that accuracy for both tests is high. A high Lonstein risk but low scoliscore says 'you will progress >5° but you probably won't go >40°'. Accordingly, I disagree with the title of the article that scoliscore provides MORE information THAN traditional estimates of curve progression. First, "traditional estimates", to me, implies several methods. They use 1, albeit I think it IS considered the 'gold standard'. As well, "More information than" suggests that they'll give the same information and then-some. I'd say scoliscore provides more reliable information for certain patients (based on current data sets), so perhaps that can be interpreted as 'more'. It's a semantics issue for me.

    What would be great is to increase the accuracy of the Lonstein (or similar method) and combine that with the scoliscore. This way an 11 year old risser 0 with a 20° and scoliscore of 60, can be told, you will progress >5° from now (relative measure), but won't progress beyond >40° (absolute measure) by skeletal maturity. And then adjust treatment goals from there.

  5. #170
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    [QUOTE=Kevin_Mc;140824]
    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.
    QUOTE]

    Kevin!!! As always the best pleasure for me to read your posts!. I’m happy to know they are in that path. I hope you may give me some links.
    Thanks!!

  6. #171
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    Quote Originally Posted by rohrer01 View Post
    Now that we have established progression probablilty with the Scoliscore, what I would be most interested in next is the trigger. This intrigues me from a molecular biologic point of view because a person with a perfectly healthy spine can carry these same "defective" genes, if you will, and never develop scoliosis. Is there a "trigger gene"?
    I think an interesting report would be to look at the scoliscore of non-scolitic people. I understand why they developed the model the way they did (and did a nice job of it). But to find possible triggers, comparing high scoliscore subjects, with and without scoliosis would be potentially very interesting. A prospective study using 5-8 year olds. Who has a high score? Who develops scoliosis? etc... A longitudinal study within a school district. It would probably only cost elebenty-million dollars. Plus one grad student. Because that's not too much for one grad student to do right? :>

  7. #172
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    Quote Originally Posted by Kevin_Mc View Post
    Hopefully. They do discuss the accuracy. Or rather, acknowledge that they aren't reporting the accuracy but showing how the test might be used clinically, i.e. risk classification. Their concern with Lonstein is that they classify more kids as moderate to high risk than the scoliscore which increases the kid's/parent's stress level. However, and they mention this in the text, the Lonstein paper is meant to predict progression of >5° from the time of detection. So these two tests are measuring two very different things. It's possible that accuracy for both tests is high. A high Lonstein risk but low scoliscore says 'you will progress >5° but you probably won't go >40°'. Accordingly, I disagree with the title of the article that scoliscore provides MORE information THAN traditional estimates of curve progression. First, "traditional estimates", to me, implies several methods. They use 1, albeit I think it IS considered the 'gold standard'. As well, "More information than" suggests that they'll give the same information and then-some. I'd say scoliscore provides more reliable information for certain patients (based on current data sets), so perhaps that can be interpreted as 'more'. It's a semantics issue for me.

    What would be great is to increase the accuracy of the Lonstein (or similar method) and combine that with the scoliscore. This way an 11 year old risser 0 with a 20° and scoliscore of 60, can be told, you will progress >5° from now (relative measure), but won't progress beyond >40° (absolute measure) by skeletal maturity. And then adjust treatment goals from there.
    I think the issue is that patients don't really care if they progress >5* per se if it isn't rigorously linked to eventually needing surgery. That is where Lonstein and Carlson fail the patient. It is a number and you can measure it but it is not especially relevant to the patient's interests.

    Here's what AB has on their website about L & C...

    Lonstein and Carlson

    For the past 25 years, Lonstein and Carlson’s4 study of 727 patients has been the basis for physicians’ estimates of probability of curve progression. While the study was in many ways forward thinking;

    Its outcome only predicted progression of 5º – 10º.
    The accompanying progression factor formula and nomogram were only valid for curves between 20º -29°.
    The predictive value for a patient with a curve of less than 20° was invalid.
    (emphasis added)

    Lonstein-Carlson 1984 Study

    Today’s management of the AIS patient is quite similar to what it has been for the past 25 years. Since Lonstein and Carlson published their criteria for predicting curve progression in 1984, no other research built on their original work has ever been published in a peer reviewed journal. Surgeons however, have taken what Lonstein and Carlson proposed and liberally applied these criteria, expanding the interpretation of the data beyond the 20 – 29° Cobb angle and beyond just 5 – 10° of progression, to encompass lesser curve magnitudes and subsequent progression much greater than 10°.

    Though Lonstein-Carlson criteria for progression of an AIS curve represented interesting observations with respect to understanding the disease of AIS at the time, its use as a prognostic tool has the same reported limits today as it did in 1984. Because the criteria are based solely on observational parameters that have already occurred (age, Risser sign, Cobb angle), the criteria have less predictive value.

    Lonstein-CarlsonThe progression factor equation and resulting graph were reported to be valid only for curves of 20 – 29° and could be used to estimate further risk of progression of 5 – 10°. This very narrow predictive capability does not approach the curve magnitude generally accepted as a reasonable point at which instrumented correction would be considered.

    Given these extensive limitations, use of Lonstein-Carlson criteria to predict curve progression is just slightly better than the random chance of assessing progression by flipping a coin.
    Sharon, mother of identical twin girls with scoliosis

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  8. #173
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    Quote Originally Posted by Pooka1 View Post
    I think the issue is that patients don't really care if they progress >5* per se if it isn't rigorously linked to eventually needing surgery. That is where Lonstein and Carlson fail the patient. It is a number and you can measure it but it is not especially relevant to the patient's interests.
    Good point, Sharon. If progression is to the point where surgery is eventually needed that is one thing. Otherwise, as you say it's just a number.

    My hope for David has always been that when he is done growing he has not progressed to the point of needing fusion. I've never really thought of a 'number' that I would like him to end up at - I suppose because it's really not relevant. If he's not to the point of needing surgery (fusion), then that will mean - whatever the number is - his dcotors feel that he'll do OK without any further treatment at that point - and that's what IS relevant.
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  9. #174
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    Quote Originally Posted by mariaf View Post
    Good point, Sharon. If progression is to the point where surgery is eventually needed that is one thing. Otherwise, as you say it's just a number.

    My hope for David has always been that when he is done growing he has not progressed to the point of needing fusion. I've never really thought of a 'number' that I would like him to end up at - I suppose because it's really not relevant. If he's not to the point of needing surgery (fusion), then that will mean - whatever the number is - his dcotors feel that he'll do OK without any further treatment at that point - and that's what IS relevant.
    Yes very well put, Maria.

    It's really all a game of fusion surgery avoidance. Will fusion surgery be required in their lifetime or not? The rest is just commentary.
    Sharon, mother of identical twin girls with scoliosis

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  10. #175
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    Quote Originally Posted by Pooka1 View Post
    I think the issue is that patients don't really care if they progress >5* per se if it isn't rigorously linked to eventually needing surgery.

    Based on my interactions with patients and families, I don't agree with that assertion. As well, I'd say that the final number, i.e. curve size at skeletal maturity, has been inappropriately ignored for decades. There are real differences in the life of a curve into adulthood depending on if it's 20°, 30° or 40°.

    No doubt, though, that the Lonstein method doesn't have great reliability. But, if improved (assuming that's possible), this type of prediction would have very important clinical implications.

  11. #176
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    Quote Originally Posted by Kevin_Mc View Post
    Based on my interactions with patients and families, I don't agree with that assertion. As well, I'd say that the final number, i.e. curve size at skeletal maturity, has been inappropriately ignored for decades. There are real differences in the life of a curve into adulthood depending on if it's 20°, 30° or 40°.
    For those parents who KNOW that 30* appears to be an important threshold then they would be interested in whether the progression will land them north of 30*. This is a small minority as far as I can tell. For parents not hip to that, they are just interested in surgery avoidance in my opinion.

    No doubt, though, that the Lonstein method doesn't have great reliability. But, if improved (assuming that's possible), this type of prediction would have very important clinical implications.
    If it could have beem improved it would have been by now in my opinion. Sometimes, the variability is just inherently deep and not graspable.
    Sharon, mother of identical twin girls with scoliosis

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  12. #177
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    Quote Originally Posted by Pooka1 View Post
    For those parents who KNOW that 30* appears to be an important threshold then they would be interested in whether the progression will land them north of 30*. This is a small minority as far as I can tell. For parents not hip to that, they are just interested in surgery avoidance in my opinion.
    And here lies the problem. Clinicians (and researchers) are not informing their patients and families about the life of the curve. Partly because this information has been slow to confirm. But, OTOH, the intense focus on surgery avoidance during adolescence has ignored the long-term implications of curves >25°. Even now that much more is known about these curves in adults, the focus remains on skeletal maturity. Parents don't care about the 'final' number because many clinicians don't care about the 'final' number.


    Quote Originally Posted by Pooka1 View Post
    If it could have beem improved it would have been by now in my opinion. Sometimes, the variability is just inherently deep and not graspable.
    No doubt.

  13. #178
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    Quote Originally Posted by Kevin_Mc View Post
    And here lies the problem. Clinicians (and researchers) are not informing their patients and families about the life of the curve. Partly because this information has been slow to confirm. But, OTOH, the intense focus on surgery avoidance during adolescence has ignored the long-term implications of curves >25°. Even now that much more is known about these curves in adults, the focus remains on skeletal maturity. Parents don't care about the 'final' number because many clinicians don't care about the 'final' number.
    I certainly agree that pediatric surgeons do not appear to be mentioning the 30* threshold to parents. If they did, parents would damn well care about whether the final number is greater than or less than 30*. I think the reason surgeons don't mention it is because it is at odds with the standard of care of bracing to 40*. The reason as far as I know for NOT bracing curves >40* is because the game is likely lost in the long term if not at maturity. So bracing would just be cruel theatrics for the parents. If it turns out that the game is lost north of 30* at maturity for many folks then that should ramify to the standard of care for bracing 30* - 40* curves unless and until it is shown to protect patients for life from surgery.

    Just my opinion. I wish surgeons would address the issue and ramifications.
    Sharon, mother of identical twin girls with scoliosis

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  14. #179
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    I think it's because most of the curve progression studies have been done by physicians who treat only kids <18yo. It's been difficult for anyone to find a large cohort of patients with radiographs that span the necessary 4+ decades. There has been talk about a centralized scoliosis registry, but I'm not sure that will ever get off the drawing board.
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  15. #180
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    Quote Originally Posted by Kevin_Mc View Post
    I think an interesting report would be to look at the scoliscore of non-scolitic people. I understand why they developed the model the way they did (and did a nice job of it). But to find possible triggers, comparing high scoliscore subjects, with and without scoliosis would be potentially very interesting. A prospective study using 5-8 year olds. Who has a high score? Who develops scoliosis? etc... A longitudinal study within a school district. It would probably only cost elebenty-million dollars. Plus one grad student. Because that's not too much for one grad student to do right? :>
    Unfortunately, it usually boils down to $$$ and grants aren't easy to get. That's the 'why' in why research teams often team up with bigger companies that hope to turn a profit.

    But IF you could compare the scores of scoliotics with non-scoliotics, which I believe Axial Biotech did in some respects, then we may be closer to knowing the trigger. The reason I say that they did do some comparison, or at least have the potential to do so, is because they took DNA from BOTH of my non-scoliotic parents along with my DNA. I'm wondering if they found a difference on a large scale and if so, why didn't they publish it? Maybe they just don't have enough collective data? It makes me curious if it isn't a specific gene combination that triggers the scoliosis to begin with. One parent has one and the other parent has the other. I'm not talking as in recessive inheritance. I'm referring to two or more different nonmatching loci, one set coming from each parent to form the awful combination that leads to progression. That would be difficult to figure out, but they do have collective data on non-scoliotics already. But like I said, maybe it's not enough to determine this. It could be that no one thought of it, which I find hard to believe. These guys know what they are doing. So that leaves us with a big "WHY?" Is there really nothing there to be found?
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