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Thread: The Axial Biotech Test is Here

  1. #46
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    Quote Originally Posted by concerned dad View Post
    It would be nice to see a full paper discussing this rather that a brief abstract. Maybe one will be out soon.
    Yeah, you'll never see that paper. This has been one of my biggest complaints about this group.

    The problem with the chart is that it is a self fulfilling prophecy. They plot ScolioScore against Risk of Curve progression. Isn't that what the scolioscore is supposed to predict? If they showed actual curve progression then it would validate the scolioscore--but they don't show that. It would be nice some actual numbers. I haven't been able to find any numbers in any publication. They cover it by saying the data is proprietary.

    Let us know if you can find any real data.

    I checked the references in the paper that you linked to, regarding genetics data.
    James W. Ogilvie and colleagues have identified genetic markers, two major genetic loci and 12 minor loci, related to the development of scoliosis [41].
    The above statement is not supported by data in the paper (ref 41). They say that there is a founder effect for 2 different genetic loci, but there is no linkage data to support it and no mention of 12 other minor loci. They don't even say what those 2 major loci are. Granted, I only spent a little time on it, but I am pretty sure its not there.

    p

  2. #47
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    Quote Originally Posted by PNUTTRO View Post
    Yeah, you'll never see that paper. This has been one of my biggest complaints about this group.

    The problem with the chart is that it is a self fulfilling prophecy. They plot ScolioScore against Risk of Curve progression. Isn't that what the scolioscore is supposed to predict? If they showed actual curve progression then it would validate the scolioscore--but they don't show that. It would be nice some actual numbers. I haven't been able to find any numbers in any publication. They cover it by saying the data is proprietary.

    Let us know if you can find any real data.
    Wait a minute. They are calibrating the Scoliscore with the known outcomes (percentage/risk of progression seen for each patient in which a scoliscore of a given magnitude was determined).

    That is a calibration curve, not a self-fulfilling prophecy as I understand what they are doing. I could be wrong. It is interesting how certain ranges of Scolisores yield the same risk.

    Having so many markers reminds me of the guys who try to fit curves empirically with high order polynomials rather than work for a determinisitic solution from known physical principles. So they just keep adding terms to improve the fit but other problems ensue. I don't know the specifics.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #48
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    Quote Originally Posted by Pooka1 View Post
    Having so many markers reminds me of the guys who try to fit curves empirically with high order polynomials rather than work for a determinisitic solution from known physical principles. So they just keep adding terms to improve the fit but other problems ensue. I don't know the specifics.

    I'm not sure I really understand their graph, but your right, it just seems a little too perfect.

  4. #49
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    Quote Originally Posted by PNUTTRO View Post
    I'm not sure I really understand their graph, but your right, it just seems a little too perfect.
    I know why you are suspicious of the graph... it can easily seem "cooked" which is what I think you were picking up on.

    I had to ponder it for a long time but I think both the x-axis and the y-axis are actual data.

    The independent variable (x-axis) is the suite of markers that go into generating a "scoliscore." These markers were identified from a population of kids with scoliosis with known outcomes, perhaps the same set of kids that they calculated progression risk from. Now that sounds circular and "self fulfilling" but I don't think it actually matters if the same population of kids that was used to generate the marker suite is used for the dependent variable (y-axis) because they are only calibrating at the moment.

    The Y-axis is generated by knowing the outcome of each patient and generating the risk of progression just from knowing the outcome. They then calibrate that with the scoliscore.

    It sounds fishy because there are really three things here... scoliscore, risk of progression, and calculating scoliscore using risk of progression. It's like hindcasting I believe which is done with data in hand where you know the answer ahead of time. It's okay to calibrate only. But I think once they calibrate their scoliscore, it can then be used as advertised... to predict the risk of progression based on the suite of markers that go into the scoliscore.

    That's what I think is going on and I certainly could be wrong. I wonder if they will ever get this stuff out in a peer-reviewed format. And I hope the journal gets some math guys to look it over.
    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."

  5. #50
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    Had another thought...

    What bothered me at first is that they don't tell us how they calculate the scoliscore. At some point, that has to be the dependent variable, not the independent variable like the graph shows.

    What I think they did was determine the marker suites of patients with known outcomes by having a graph of risk (%) on the x-axis as the independent variable versus VARIOUSLY CALCULATED scoliscores on the y-axis (i.e., opposite to the graph they show). Then they picked the one that yielded the best curve (highest slope maybe).

    Then they took the optimized scoliscore and calibrated it against the risk, making the scoliscore the independent variable which is how it has to be if they want to use it the way they do.

    I wish we had a math guy on the group. Maybe Ti Ed, as an engineer, could comment.
    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."

  6. #51
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    Text doesn't match figure

    There's a problem that I just noticed here...

    The text states,

    "There was little statistical difference in the curves representing risk of progression versus curve severity when the two groups were compared. Graph 1"

    But the graph is labeled (at least) risk of curve progression (%) versus scoiliscore.

    It is impossible to know what they mean but my best guess is that is their calibration curve.
    Last edited by Pooka1; 06-02-2009 at 07:57 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."

  7. #52
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    the other thing I was amused to see was from the axialbiotech website where they were talking about how great it was to do DNA work in Utah. They said:
    Known Paternity: Fewer errors occur when studying extended families in Utah because the incidence of “non-paternity” (unknown or incorrectly attributed fathers) is lower. (<1% among Utah residents verses approximately 10% for the rest of the U.S. )



    That is funny, considering if this is the same test that me and my family contributed our DNA to, and I'm pretty sure it is, we are not from Utah. My father is "Mormon" but I am not. Maybe they used the LDS geneological records to choose candidates. That would be the only way they could have tracked me down. Now how did they find out I had scoliosis? Hmmmmm..... It's a scary world out there! LOL Can they do that?

  8. #53
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    Quote Originally Posted by rohrer01 View Post
    the other thing I was amused to see was from the axialbiotech website where they were talking about how great it was to do DNA work in Utah. They said:
    Known Paternity: Fewer errors occur when studying extended families in Utah because the incidence of “non-paternity” (unknown or incorrectly attributed fathers) is lower. (<1% among Utah residents verses approximately 10% for the rest of the U.S. )



    That is funny, considering if this is the same test that me and my family contributed our DNA to, and I'm pretty sure it is, we are not from Utah. My father is "Mormon" but I am not. Maybe they used the LDS geneological records to choose candidates. That would be the only way they could have tracked me down. Now how did they find out I had scoliosis? Hmmmmm..... It's a scary world out there! LOL Can they do that?
    I was referred by a friend, and all 3 of my children and I participated. We are not Mormon, and I know who my kids' father is. Axial has sent a letter for the second time asking for more DNA from son#2.

    I think I'll be getting my daughter's test results tomorrow.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  9. #54
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    They never gave us any personal results. Just updates on the progress of the study. It is very encouraging, at least maybe my grandchildren will benefit from it. After talking to more of my family members, scoliosis is way more prevalent than I knew. I never knew ANYONE in my family has it. As it turns out I have a paternal grandmother, maternal aunt, and a neice. My daughter also developed a very mild case. And of course, myself. Definitely sounds genetic to me! Axial Biotech doesn't have all that history on me because I found out AFTER me and my parents sent in our DNA. I would like to know if it recessive, dominant, or a combination type gene, or many genes contributing. I was hoping they would send me this information at least, but nothing.

  10. #55
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    Quote Originally Posted by rohrer01 View Post
    They never gave us any personal results. Just updates on the progress of the study. It is very encouraging, at least maybe my grandchildren will benefit from it. After talking to more of my family members, scoliosis is way more prevalent than I knew. I never knew ANYONE in my family has it. As it turns out I have a paternal grandmother, maternal aunt, and a neice. My daughter also developed a very mild case. And of course, myself. Definitely sounds genetic to me! Axial Biotech doesn't have all that history on me because I found out AFTER me and my parents sent in our DNA. I would like to know if it recessive, dominant, or a combination type gene, or many genes contributing. I was hoping they would send me this information at least, but nothing.
    No, we were part of the study but didn't get any personal results either. About a month ago, my daughter took the test that is now on the market which resulted from the study. That's the one we're getting results on.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  11. #56
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    Quote Originally Posted by debbei View Post
    No, we were part of the study but didn't get any personal results either. About a month ago, my daughter took the test that is now on the market which resulted from the study. That's the one we're getting results on.

    It will be very interesting to hear the results of this test, if you are willing to share. Maybe they only needed a second sample of your son's DNA because a labby dropped it, it got contaminated, or it didn't turn out in the PCR machine, or they left the gel running too long and lost it all? Could have been many things gone wrong with his sample. I'm sure it's nothing to be too concerned about.
    My daughter is too old to be in the study sample, she is 20. She won't even get another x-ray unless she has pain. She doesn't want to be exposed to the radiation, can't say that I blame her, though. There are risks with everything.
    Something kind of interesting though, is my son has such a slight curvature that it's not considered "scoliosis" but he does have spina bifida occulta, which I also have. I wonder if there is a correlation there. Maybe a different study is being conducted on that. I'm not up on all the current studies, my life has been going in a completely different direction until recently.
    I also wonder if there is a correlation to the gene/s connected with Marfan's syndrome, as scoliosis is very common in people with Marfan's. I have a nephew with Marfan's. My personal opinion is that it is that not one single gene is involved. And if a person gets a "good" copy of a gene and a "bad" copy of the same gene, there can still be enough bad protein (gene product) floating around that the good stuff isn't enough to completely suppress the disease. That would explain why my daughter has a very mild case.
    In conclusion to this, all I can say is I need to read the reasearch that's been done. Something I have obviously neglected to do. I feel priviledged to have been part of the study and hope some good comes from it.
    I look forward to hearing from you. I hope I wasn't confusing or too off topic.
    Last edited by rohrer01; 04-14-2010 at 11:12 PM.

  12. #57
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    Quote Originally Posted by rohrer01 View Post
    It will be very interesting to hear the results of this test, if you are willing to share. Maybe they only needed a second sample of your son's DNA because a labby dropped it, it got contaminated, or it didn't turn out in the PCR machine, or they left the gel running too long and lost it all? Could have been many things gone wrong with his sample. I'm sure it's nothing to be too concerned about.
    My daughter is too old to be in the study sample, she is 20. She won't even get another x-ray unless she has pain. She doesn't want to be exposed to the radiation, can't say that I blame her, though. There are risks with everything.
    Something kind of interesting though, is my son has such a slight curvature that it's not considered "scoliosis" but he does have spina bifida occulta, which I also have. I wonder if there is a correlation there. Maybe a different study is being conducted on that. I'm not up on all the current studies, my life has been going in a completely different direction until recently.
    I also wonder if there is a correlation to the gene/s connected with Marfan's syndrome, as scoliosis is very common in people with Marfan's. I have a nephew with Marfan's. My personal opinion is that it is that not one single gene is involved. And if a person gets a "good" copy of a gene and a "bad" copy of the same gene, there can still be enough bad protein (gene product) floating around that the good stuff isn't enough to completely suppress the disease. That would explain why my daughter has a very mild case.
    In conclusion to this, all I can say is I need to read the reasearch that's been done. Something I have obviously neglected to do. I feel priviledged to have been part of the study and hope some good comes from it.
    I look forward to hearing from you. I hope I wasn't confusing or too off topic.
    Sure, I'll let you know when I find out. Apparently, the results are into the Dr's office, but my daughter's ortho doesn't want to 'interpret the results for us'. Instead, he wants this Axial representative who he works with to give us the info. My daughter is one of the first in his office to have the test, so I guess they're trying to work out their process.

    As for my son, this is the 3rd sample he is sending in. They told us on the 2nd sample that there was someting exciting with his DNA, and they even sent him a gift card as compensation for the 2nd sample. He's sending it in for free this time. I don't know--it just makes me want to watch him carefully as he gets older. He turns 18 this fall, so maybe I'll bring him back to the ortho one more time for a look over.

    I'll keep you posted,
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  13. #58
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    Wow! I wonder what exciting thing they found? Does he have scoliosis?

  14. #59
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    Quote Originally Posted by rohrer01 View Post
    Wow! I wonder what exciting thing they found? Does he have scoliosis?
    Hi,
    yes the son who they've requested extra DNA twice does have a mild case of scoliosis.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  15. #60
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    http://www.ncbi.nlm.nih.gov/pubmed/22614798

    Does ScoliScore™ Provide More Information Than Traditional Clinical Estimates Of Curve Progression?
    Roye BD, Wright ML, Williams BA, Matsumoto H, Corona J, Hyman JE, Roye DP Jr, Vitale MG.
    Source

    1Department of Orthopaedic Surgery - Columbia University Medical Center, New York, NY. 2Division of Orthopaedics - Southern Illinois University - School of Medicine - Springfield, IL.
    Abstract

    STRUCTURED ABSTRACT: Study Design. Retrospective study comparing ScoliScore and clinical risk estimatesObjective. The purpose of this study is to compare risk stratification between ScoliScore and traditional clinical estimates to determine if ScoliScore provides unique information.Summary of Background Data. ScoliScore™ is a genetic prognostic test designed to evaluate the risk of curve progression in skeletally immature Adolescent Idiopathic Scoliosis patients with Cobb angles of 10°-25°. Clinicians are currently trying to better understand the role this test may play in guiding clinical decision making as current standards of curve progression are largely based on radiographic markers such as curve magnitude and bone age.Methods. Ninety-one patients who received ScoliScore testing at our center and met study inclusion criteria were identified. Patients were given a "clinical risk" level using their Risser sign and Cobb angle. Assigned clinical risk levels were compared to the ScoliScore risk levels reported by the manufacturer's scoring algorithm.Results. ScoliScore risk distribution in our population was 36%-low risk, 55%-intermediate risk, and 9%-high risk. This compares with 2%, 51%, and 47%, respectively for comparable clinical risk groupings. Only 25% of patients were in the same risk category for both systems. There were no significant correlations between ScoliScore and age, race, menarchal status, Risser sign or gender. There was a positive correlation between the Cobb angle and the ScoliScore (r = .581, p<0.001). Cobb angle remained significant in the multivariate regression model (p<0.001) and Cobb angle was found to account for 33.3% of ScoliScore's variance.Conclusion. Only Cobb angle showed significant correlation with ScoliScore among the socioclinical variables studied. The risk distribution of the two risk estimation systems examined differed markedly: ScoliScore predicted nearly 16x more low risk patients and over 5x fewer high risk patients. This demonstrates that ScoliScore provides unique information to traditional predictors of curve progression, advancing our understanding of the role of ScoliScore in the clinical setting.
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