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Thread: Scoliscore - Quo Vadimus?

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    The rods bend because they didn't fuse because the rods weren't enough to allow fusion to occur as far as I know. Linda will edify me if that is wrong. That is why surgeons will cite the pedicle screw as the major advancement in this field. The rate of pseudoarthrosis is very low with screws and in fact the implants are so good that 95% of kids need no physical restrictions at all and still get a solid fusion. That's pretty good.
    Well, that makes me glad that they didn't do the "fusion" on me at 16. I came within a hairs width of having it done and they decided not to at the last minute. It would have been Harrington's. I may have the fusion soon, because of adult progression - which, by the way wasn't mentioned in the videos, except to say our X-rays were hard to find in the 40* range and not fused (I guess we're the throw away crowd) - but at least I will get the "better" technology if you can say that about any fusion.

    I have a B.S. in Cell and Molecular Biology and minors in Mathematics and Chemistry. Just an FYI. Haven't worked since graduation. But I still LOVE genetics!

  2. #32
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    Also, I think that it IS possible for a fusion to bend, if the rods don't hold. Bone can be bent over time. Think about Chinese baby girl feet.... ouch!

  3. #33
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    Quote Originally Posted by rohrer01 View Post
    I have a B.S. in Cell and Molecular Biology and minors in Mathematics and Chemistry. Just an FYI. Haven't worked since graduation. But I still LOVE genetics!
    It shows in your thinking. You and Pnuttro are our two molecular people then. Cool.
    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."

  4. #34
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    Quote Originally Posted by Pooka1 View Post
    It shows in your thinking. You and Pnuttro are our two molecular people then. Cool.
    Not so "cool" as RUSTY! I find this stuff fascinating. But afraid of misstating things based on flawed memory. I don't have enough time to do the research to be as accurate as I'd like. But at least understanding a little bit of the concept behind it helps me follow along. I'm an expert my NO means.

    I'm guessing you are in the math field, since you state a lot of statistical information, etc...?

  5. #35
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    What I was suggesting in me and my daughter's case is maybe a case of codominance, where when both alleles are present, one is not dominant over the other. You would see this in a blending of colors in flowers, I believe. That would explain why my daughter has a much smaller curve than I do (a blending so to speak). Just another observation.

    It will be interesting to know how many genetic markers actually contribute to scoliosis. My daughter was also tested for Marfan's and I have a slight mitral valve prolapse (still within normal parameters). I think they may end up having broad markers, that cover a variety of connective tissue disorders, then more and more specific ones that pertain specifically to scoliosis. Maybe the broader markers would indicate that a person may be susceptible to more of an environmentally enduced scoliosis - (like my shy aunt slouching to be shorter than the boys - although I think she still would have developed kyphoscoliosis). I hope their findings help take the stigma off of the self-induced scoliosis theory that my family throws at me. It's quite discouraging to get blamed for progression because you did or didn't do something. It affects a child's self-esteem growing up - believe me, I heard it all the time as an adolescent. I am thankful that someone is doing something about it!

    I would like to understand what information exactly they are using to compile the scoliscore? I think Axial Biotech owes us participants better explanations than they are giving us, since this was a completely voluntary and uncompensated study. EVERYONE wasn't from Utah. My doctor recomended me to join the study. I am originally from the Northwest Coast. But..... I do have a long family history in the Mormon Church, right back to the founders and yep, up to my own father. Maybe, had I known that they were going to take most of their population from Utah, I should have told them this. Maybe it would have disqualified me from the study? I'd also like to know how they came up with only nine generations of mutation that connects us all? Did anyone besides Pooka1 catch that? Maybe the research we should be conducting now is how many of us have Mormon ancestors?

    Seriously, I'm not saying that to be a smart-aleck. There are populations with specific genetic issues. Look a Tay Sachs, Sickle Cell, etc... it happens when you get too much interbreeding in a gene pool. It makes the gene pool small. Then when random mutations occur, they get passed around and quickly.

    Anyway, I'm done rambling for now. I have THINGS to do... You all have a nice night!!!

  6. #36
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    Quote Originally Posted by rohrer01 View Post
    Not so "cool" as RUSTY! I find this stuff fascinating. But afraid of misstating things based on flawed memory. I don't have enough time to do the research to be as accurate as I'd like. But at least understanding a little bit of the concept behind it helps me follow along. I'm an expert my NO means.

    I'm guessing you are in the math field, since you state a lot of statistical information, etc...?
    No I'm not a mathematician and I am definitely not a stats person! I think that if you need fancy statistics to interpret your data then you did the wrong experiment. But I'm in the minority on that.

    I'm a researcher in earth sciences. Thus my obligate reliance on bio types and molecular types. My few courses in biology, biochem, microbio etc. don't help me much with the thoroughgoing medical biochem topics that float by occasionally in this little sandbox.

    We do have an MPH here on the group who is a real asset in my opinion especially when discussing the literature and its limitations.
    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. #37
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    Right On!

    tonibunny

    I was contacted by the Director of Comms at Axial Biotech a few weeks ago, and she said I could contact her at any time with questions about Scoliscore. I'll ask her if she could possibly come here so you can have a discussion Dingo
    Right on! If a Q/A thread with Axial ever gets started count me in!

  8. #38
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    genetic disease

    rohrer01

    Just because a disease hits two identical twins doesn't indicate that it's caused by heredity. I believe the concordance rate for Leprosy among identical twins is something like 60% to 80%. Leprosy is not a genetic disorder. It's caused by a bacterial infection and can be easily cured with antibiotics.

    Another thing to keep in mind is that just because a disease hits a family particularly hard doesn't mean it's genetic. Family members share a lot more than genes.

    Case in point:
    High Blood Pressure Could Be Caused By A Common Virus, Study Suggests

    (May 16, 2009) — A new study suggests for the first time that cytomegalovirus (CMV), a common viral infection affecting between 60 and 99 percent of adults worldwide, is a cause of high blood pressure, a leading risk factor for heart disease, stroke and kidney disease.
    Long story short, wash your hands.
    Last edited by Dingo; 04-17-2010 at 10:33 PM.

  9. #39
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    Quote Originally Posted by rohrer01 View Post
    It will be interesting to know how many genetic markers actually contribute to scoliosis. My daughter was also tested for Marfan's and I have a slight mitral valve prolapse (still within normal parameters). I think they may end up having broad markers, that cover a variety of connective tissue disorders, then more and more specific ones that pertain specifically to scoliosis. Maybe the broader markers would indicate that a person may be susceptible to more of an environmentally induced scoliosis - (like my shy aunt slouching to be shorter than the boys - although I think she still would have developed kyphoscoliosis). I hope their findings help take the stigma off of the self-induced scoliosis theory that my family throws at me. It's quite discouraging to get blamed for progression because you did or didn't do something. It affects a child's self-esteem growing up - believe me, I heard it all the time as an adolescent. I am thankful that someone is doing something about it!
    Wow that's really sad. It's a shame when folks don't understand the medical conditions of their kids. I think it is physically impossible for you to have done anything to prevent or encourage progression on your own. It seems obvious.

    I would like to understand what information exactly they are using to compile the scoliscore? I think Axial Biotech owes us participants better explanations than they are giving us, since this was a completely voluntary and uncompensated study.
    Well he mentioned that they used known case outcomes and some complex math by which I think he means used massive computing to vary the prevalence of perhaps hundreds of marker gene sequences to figure out which combination of which sequences produces the best empirical fit to the known outcomes. They then converted that to a numerical score arbitrarily. It's complex because they are trying to optimize the fit using an equation with 53 (or more) variables. That can only be done by computer. That's my guess as to what is going on there.

    EVERYONE wasn't from Utah. My doctor recommended me to join the study. I am originally from the Northwest Coast. But..... I do have a long family history in the Mormon Church, right back to the founders and yep, up to my own father. Maybe, had I known that they were going to take most of their population from Utah, I should have told them this. Maybe it would have disqualified me from the study? I'd also like to know how they came up with only nine generations of mutation that connects us all? Did anyone besides Pooka1 catch that? Maybe the research we should be conducting now is how many of us have Mormon ancestors?
    I was incorrect about assuming all test subjects were from Utah as you point out. But manyybe most are... we don't know. I certainly hope that isn't the case as I think it has been shown that between five and ten men fathered every child presently in the state. But seriously, I think that is a potential problem that hopefully will not compromise the millions spent on developing this test.

    The 9th generation thing for AIS compared to the 24th generation in the random population is very compelling if it holds up.

    Seriously, I'm not saying that to be a smart-aleck. There are populations with specific genetic issues. Look a Tay Sachs, Sickle Cell, etc... it happens when you get too much interbreeding in a gene pool. It makes the gene pool small. Then when random mutations occur, they get passed around and quickly.
    Yes that is a live issue as far as we can tell. Have they published this stuff yet in a peer-reviewed journal? I think I recall Pnuttro predicting that with 53 markers, it will never reach the printed page.
    Last edited by Pooka1; 04-18-2010 at 09:04 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."

  10. #40
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    Mono- vs dizygotic twinning

    Quote Originally Posted by rohrer01 View Post
    She is the mother of identical twins who not only both had scoliosis, but also both progressed to surgical intervention. Not genetic? Hmmm... I'm guessing, Pooka1, that the girls did not manifest "identical" symptoms? Maybe that is where environment comes in to play - even if it is environment in the womb.
    The best available evidence on scoliosis and twinning is probably this metadata paper indicating ~73% concordance between identicals and ~36% concordance between fraternals (= any sibling/sibling pair).

    http://journals.lww.com/spinejournal...of_the.14.aspx

    Results. Thirty-seven sets of twins were monozygous, and 31 sets were dizygous. Concordance was 73% among monozygous twins and 36% among dizygous twins. The difference is statistically significant at P < 0.003. Curve severity could be compared in 20 sets of monozygous twins and 16 sets of dizygous twins. Among monozygous twins, there was a correlation coefficient of r = 0.399 (P < 0.126). Curve pattern comparison was not statistically significant.

    Conclusions. Monozygous twins have a significantly higher rate of concordance than dizygous twins, and the curves in monozygous twins develop and progress together. Based on these data, there is strong evidence for a genetic etiology for adolescent idiopathic scoliosis.
    (emphasis added)

    A genetic component is widely accepted by researchers as far as I know based on multiple lines of evidence, not just twins studies.
    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."

  11. #41
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    quote

    At the 1:22 mark.

    Dr. James Ogilvie
    If you can stretch a multigenerational family pedigree and then look at the relatedness among people eh... you can... eh... most people are eh... related to about the 24th generation you have a common ancestor. Those people with idiopathic scoliosis are related to a common ancestor at about the 9th generation. So it is a very clearly distinct population that has idiopathic scoliosis.
    I agree with Dr. Ogilvie. Children with Scoliosis probably do share common genes that make them susceptible to Scoliosis. This means that Scoliosis works the same way as every other disease that mankind has discovered.

    Case in point:
    Scientists pinpoint flu gene

    An unlucky combination of "vulnerable" genes could explain why some people recover from the flu overnight and others struggle to shake off the virus for weeks. Infectious disease experts in Australia have identified a mix of genes that make people eight times more likely to suffer for longer, and experience severe symptoms, once they fall ill.
    Last edited by Dingo; 04-17-2010 at 11:12 PM.

  12. #42
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    Dingo,
    Are you implying that you think that AIS is VIRAL? Maybe if there is a lot of close exposure to other family members, I might buy into that theory. My family lacks the closeness of many families, and why my daughter and not my sons? If what you suspect is true, the mother would most likely have to be infected with the scoliosis virus before or during pregnancy. Did my paternal grandmother pass her virus to my dad and then, eh??? Well, that one doesn't work (and my dad doesn't have scoliosis). Maybe it's floating in the environment, who knows? Viruses are nasty little bits of RNA that like to make trouble for us.

    I do see your point that environmental factors do play distinct roles in disease. I will never argue that one. However, if some outside factor were to in fact "cause" scoliosis, then it would cause it in everyone predisposed to getting it. Here we are, right back to genetics. As it stands we will have to play the wait and see game and see what shows up. I guess I just don't quite understand what your argument is for playing down the genetic component to this? The evidence thus far, says YES, there is a genetic link to this. I think if the geneticists out there look at it from their perspective and people like you, who are looking at other causes look at it from your perspective, we might just come to a common agreement. I have seen no proof as of yet that suggests that it is NOT genetic. I see no proof so far as to suggest a possible source of infection, so to speak. So again, I don't quite follow where you are going with this debate. Sorry.

    And to anwer Pooka1's question. Nothing I say here is peer reviewed unless I quote it and tell you where I'm getting it from. I'm just mulling this whole thing over in my mind and trying to make sense of it all. Just as most everyone else is doing. I have nothing to prove. I am just gaining insight in to how everyone is viewing this and expressing my opinion based on what I think and hear in and OUT of the forum.

    Also, if, in fact, this study was tainted by an overabundance of "mormon" study subjects, we could be viewing Mormon, no longer as a religion, but as an ethnicity, akin to the "Jewish" population with its commom diseases.

    Again, just rambling my thoughts. I should go to bed before I get myself into trouble.

  13. #43
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    Quote Originally Posted by Dingo View Post
    rohrer01

    Just because a disease hits two identical twins doesn't indicate that it's caused by heredity. I believe the concordance rate for Leprosy among identical twins is something like 60% to 80%. Leprosy is not a genetic disorder. It's caused by a bacterial infection and can be easily cured with antibiotics.

    Another thing to keep in mind is that just because a disease hits a family particularly hard doesn't mean it's genetic. Family members share a lot more than genes.

    Case in point:
    High Blood Pressure Could Be Caused By A Common Virus, Study Suggests



    Long story short, wash your hands.

    Just curious as to what the ratio of Leprosy was in the general sibling population. I'm wondering also if monozygotic twins "share" more than other siblings including dizygotic twins? Areas where Leprosy is common are poor areas where people bathe in the same water as each other and often drink that same water. Leprosy is a bacterial condition due to poverty and lack of available clean water, sewage, etc.

    Do you work for the CDC? You should! You might really be on to something from the "germ" perspective. I just don't see any evidence pouring in, yet. I don't really think the CDC would think that a scoliosis epidemic would be something high on their priority list. JMHO

    wash, wash, wash!!! I agree. Don't kill the good "bugs" though. We need them, too.

  14. #44
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    Quote Originally Posted by Pooka1 View Post
    No I'm not a mathematician and I am definitely not a stats person! I think that if you need fancy statistics to interpret your data then you did the wrong experiment. But I'm in the minority on that.
    Statistitians are called Mathemagicians...

    You can fudge the figures in any study. Just throw out the few bits of data that don't fit the curve and viola! Just how many "bits" are getting thrown out? How many are allowed to be thrown?

  15. #45
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    Quote Originally Posted by rohrer01 View Post
    People with the old Harrigton rods, I believe, continue to progress because those rods tended to bend. I don't know how the "fusion" allows it
    I've got an old Harrington Rod, I've had it for 25 years and it's not moved an inch and I've never had any trouble from it. There are tons of people out there like me, but you only ever hear about the ones who have developed problems (who are in fact the minority!) because the others are out there living their lives. If people do progress, it's because their underlying fusion isn't solid.

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