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Thread: Scoliscore - Quo Vadimus?

  1. #46
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    Quote Originally Posted by rohrer01 View Post
    Statistitians are called Mathemagicians...
    That's a good one. I try for a clean result one way or the other.

    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?
    Well that's data selection and unless they say they did it and have a very good reason, it constitutes scientific misconduct and should result in a paper being withdrawn.

    I certainly hope they have at least one and hopefully two mathematical biologists and at least one statistician review that work. I don't know exactly what they are doing but it seems like they found a few hundred markers that occurred in various combinations in various patients with differing curve trajectories. They then took various combinations (300C50 for example) using massive computing assets to fit various perhaps even weighted combinations of these markers until they empirically got the best fit to the observed data. So it ended up being a 53 variable equation as the best fit. They then had it kick out a number between 0 and 200 for various regions of this curve. But I think a potential issue is whether that type of equation could eve possibly yield a unique solution if that is what they are doing.

    I don't know what they did but that's my guess.

    Let's see if they ever publish. Maybe Pnuttro will be right and it won't reach the printed page. Just reaching the press conference stage has a long history of going nowhere.
    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."

  2. #47
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    cause of scoliosis

    rohrer01

    Are you implying that you think that AIS is VIRAL?
    Viral infections are a known cause of spinal deformities in both animals and humans. On the flip side no childhood, genetic disease hits 2% to 4% of the global population. Not one. IMHO scientists should mine where they've found gold before, not on a barren landscape.

    You might find these two stories interesting.

    Scoliosis epidemic in Jamaica

    Thus, in Jamaica, there has been almost an epidemic of idiopathic scoliosis which started around 1963 and began to fall off after 1982.
    Indoor heated swimming pools: the vulnerability of some infants to develop spinal asymmetries years later.

    Evidence reported in an earlier paper suggests that infants introduced to indoor heated swimming pools in the first year of life show an association with spinal asymmetries including progressive adolescent idiopathic scoliosis (AIS) and in normal subjects vertical spinous process asymmetry.

  3. #48
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    Quote Originally Posted by Pooka1 View Post
    That's a good one. I try for a clean result one way or the other.



    Well that's data selection and unless they say they did it and have a very good reason, it constitutes scientific misconduct and should result in a paper being withdrawn.

    I certainly hope they have at least one and hopefully two mathematical biologists and at least one statistician review that work. I don't know exactly what they are doing but it seems like they found a few hundred markers that occurred in various combinations in various patients with differing curve trajectories. They then took various combinations (300C50 for example) using massive computing assets to fit various perhaps even weighted combinations of these markers until they empirically got the best fit to the observed data. So it ended up being a 53 variable equation as the best fit. They then had it kick out a number between 0 and 200 for various regions of this curve. But I think a potential issue is whether that type of equation could eve possibly yield a unique solution if that is what they are doing.

    I don't know what they did but that's my guess.

    Let's see if they ever publish. Maybe Pnuttro will be right and it won't reach the printed page. Just reaching the press conference stage has a long history of going nowhere.
    I'm not accusing Axial Biotech of this. I'm just saying it can be done, and really who is going to catch anyone at doing this if the data is just deleted. I know that is one reason for peer review, but if the data "doesn't exist" so to speak, well? We are trusting that the PhD's in the world are all honest. And we know, like everyone else, some have an agenda. You see it in drug companies all the time putting out bad drugs. They are not all honest. I'm just hoping the Axial Biotech people are.

  4. #49
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    Quote Originally Posted by Pooka1 View Post
    That's data selection and unless they say they did it and have a very good reason, it constitutes scientific misconduct and should result in a paper being withdrawn.
    I had one professor call it "massaging the figures". It wasn't really important at the time, just practice work. But it does, in my opinion, teach a dishonest work ethic, even though she was just trying to get through the class and be nice and not make everyone do it over again.

    I did undergraduate research, and if something like that came up, It was DOCUMENTED and the experiment repeated by another individual. The work I was doing was for publishing and peer review. We were very careful.

    I'm not sure that just havig 53 markers will disqualify the paper from being published, if the information is consistent and accurate. I think that the problem they may face is with their study sample. They may have to make a revision about their "population" and repeat the study on a purely non-mormon group and see if the results compare. But I still think that they could publish the "mormon" study as long as they specify that it will be repeated with a more randomized group of subjects. Skewing is very bad for data interpretation, but not always unuseful. I think, if they did it right, they should have no problem publishing, granted they acknowledge the above "problems".

  5. #50
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    Genetic Predisposition to Progression & Outcome of Treatment Options

    Post surgical pain is a confusing topic. I read the surgical boards quite a bit. This is something both surgeons and patients struggle with. As I have said before, as someone with scoliosis - surgery could always be in my future (a fact I cannot ignore), so - while my heart and soul is engaged in the non surgical ... I try to keep an eye on the surgical as well since at this time, medical science is at a loss to accurately predict my future. And I do wonder what the continued information gathered by Scoliscore may offer all patients as data is collected and analyzed - hopefully patients will be followed throughout their lifetimes.

    Some who undergo spinal fusion report being pain free. And some report continued pain, even though fusion is solid and instrumentation successful. So - barring instrumentation or fusion failure, sometimes, post surgical pain is still an issue - why? Sometimes non surgical methods prove most promising, and other times a complete failure - why?

    Some published articles indicate that when instrumentation is removed - that there are times when a fused spine will progress. Why is that? Could all these questions be answered by knowing the genetic predisposition to progress throughout a lifetime?

    That is my question. If there is any truth in the theory, then this may prove as a guide regardless of treatment option.

    If the theory is correct - this also has application to explaining bracing (and other non surgical) failures and/or successes.

    In any case, I think there is a need to know regarding the prediction of progression in the mature spine. And maybe Scoliscore will be able to provide that information, provided data is collected, analyzed and patients followed throughout their lifetimes.

    We may find that those with low to intermediate Scoliscores fair better regardless of treatment options due to a lack of genetic predisposition to progress? That would be very valuable information in making our decisions in treatment options.

  6. #51
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    Genetics + Environmental Factors

    Dingo - you would have made an exceptional scientist I think.

    Your offered articles were thought provoking. And plays into an earlier post offered which, in the simplest terms, outlined what may effect the outcome of any medical condition:

    A) Heredity
    B) Environment (usually damage)
    C) A combination of A & B

    A medical doctor I highly respect added world view to that list. Anyway the offered articles look like a combination of genetics and environmental factors to me. Singapore is currently reporting a higher incidence of scoliosis. Radiation is a known environmental factor (probably combined with heredity) and the radiation levels there are quite high according to the World Health Organization: http://www.who.int/uv/intersunprogra...en/index3.html I don't know about Jamaica but it would be interesting to know the radiation levels in that region between the years 1963-1982.

  7. #52
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    Quote Originally Posted by rohrer01 View Post
    I'm not accusing Axial Biotech of this.
    Right I know that. There is no way any of us can know that.

    I'm just saying it can be done, and really who is going to catch anyone at doing this if the data is just deleted. I know that is one reason for peer review, but if the data "doesn't exist" so to speak, well? We are trusting that the PhD's in the world are all honest. And we know, like everyone else, some have an agenda. You see it in drug companies all the time putting out bad drugs. They are not all honest. I'm just hoping the Axial Biotech people are.
    Yes there is some history of subterfuge when so much money has been spent and so much more money is riding on the outcome.

    It's interesting to see that some surgeons have stock in the company. It would be very instructive if we were told if/when they ever dumped stock going forward. I didn't realize Axial Biotech was publicly held.
    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."

  8. #53
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    Quote Originally Posted by rohrer01 View Post
    I'm not sure that just having 53 markers will disqualify the paper from being published, if the information is consistent and accurate. I think that the problem they may face is with their study sample. They may have to make a revision about their "population" and repeat the study on a purely non-mormon group and see if the results compare. But I still think that they could publish the "mormon" study as long as they specify that it will be repeated with a more randomized group of subjects. Skewing is very bad for data interpretation, but not always unuseful. I think, if they did it right, they should have no problem publishing, granted they acknowledge the above "problems".
    Well now I am not so sure the ~9600 samples were dominated by Mormons but if it is then it might be an issue. I think this business might have to do with "founder effect" thought that might not be bad not being a biologist, geneticist, etc., I can't be sure.

    In any case, I can't imagine they will repeat the study... it is millions and millions to date as far as I can tell.
    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."

  9. #54
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    rohrer01 nails it

    Quote Originally Posted by rohrer01 View Post
    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.
    Curve characteristics in monozygotic twins with adolescent
    idiopathic scoliosis 3 new twin pairs and a review of the literature

    Lodewijk W van Rhijn1, Edwin J P Jansen1, Chris M T Plasmans2 and
    Ben E E M J Veraart3

    Departments of Orthopaedic Surgery, 1University Hospital Maastricht, P.O. Box 5800, NL-6202 AZ Maastricht, The Netherlands

    ABSTRACT – Most authors state that there is strong
    evidence for a genetic origin of adolescent idiopathic
    scoliosis (AIS). This conclusion is mainly based on the
    fact that the rate of concordance for AIS in monozygotic
    twins is signiŽ cantly higher than that in dizygotic
    twins. However, it is of interest to determine whether all
    elements of scoliosis formation are genetically predetermined.
    If this were the case, there would perhaps be less
    place for closed treatment.

    We surveyed the literature for monozygotic twin pairs
    in which both members suffered from idiopathic scoliosis
    and added 3 pairs from our own patient group. The
    total group consisted of 32 twin pairs.
    We found that gender, direction of the convexity, the
    level of the apex and the kyphotic angle were determined
    more by genetic factors than the lateral Cobb
    angle of the scoliotic curve. This suggests that variations
    in the environment may affect the curve patterns
    in monozygotic twins.


    (emphasis added)
    Last edited by Pooka1; 04-18-2010 at 08:47 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. #55
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    Quote Originally Posted by Pooka1 View Post
    Curve characteristics in monozygotic twins with adolescent
    idiopathic scoliosis 3 new twin pairs and a review of the literature

    Lodewijk W van Rhijn1, Edwin J P Jansen1, Chris M T Plasmans2 and
    Ben E E M J Veraart3

    Departments of Orthopaedic Surgery, 1University Hospital Maastricht, P.O. Box 5800, NL-6202 AZ Maastricht, The Netherlands

    ABSTRACT – Most authors state that there is strong
    evidence for a genetic origin of adolescent idiopathic
    scoliosis (AIS). This conclusion is mainly based on the
    fact that the rate of concordance for AIS in monozygotic
    twins is signiŽ cantly higher than that in dizygotic
    twins. However, it is of interest to determine whether all
    elements of scoliosis formation are genetically predetermined.
    If this were the case, there would perhaps be less
    place for closed treatment.

    We surveyed the literature for monozygotic twin pairs
    in which both members suffered from idiopathic scoliosis
    and added 3 pairs from our own patient group. The
    total group consisted of 32 twin pairs.
    We found that gender, direction of the convexity, the
    level of the apex and the kyphotic angle were determined
    more by genetic factors than the lateral Cobb
    angle of the scoliotic curve. This suggests that variations
    in the environment may affect the curve patterns
    in monozygotic twins.


    (emphasis added)
    It is very interesting that my husband (who is a mechanic - but likes to try to understand these things) and I were talking about this very subject. I would want to know especially the GENDER of the monozygotic twins in a particular study. Have you ever heard of X-inactivation? That is in females. We only need one X chromosome and the other one just "inactivates" itself and has very little gene expression coming from it. It can be seen as a blob at the edge of the nucleus using stain and a standard microscope on the "oil" setting. Quite fascinating. If, as it has been suggested in one of the videos, that at least one scoliosis "gene" is X-linked. You would see that not all of the monozygotic girls would get scoliosis unless both X's had a bad allele. X-inactivation is completely random and occurs sometime in early embryonic developement, if my memory serves me well. Boys, on the other hand, have only one X and they need it (assuming they don't have a multiple X syndrome of some type). So in the male monozygotic twin population, you would expect to see BOTH twins suffer from scoliosis 100% of the time (outside factors excluded), if it is in fact X-linked. There may be other genes that are autosomal (not on a sex chromosome) and in these cases, environment, as Dingo has suggested would be the deciding factor for gene expression. Pnuttro can chime in here and correct me at any time!!

    I've invited my friend, who is a PhD Molecular Biologist to lunch. I will definitely be bringing this up to see what she thinks. Her forte is cell division, but I'm sure she will have some very good insight.

  11. #56
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    Quote Originally Posted by rohrer01 View Post
    It is very interesting that my husband (who is a mechanic - but likes to try to understand these things) and I were talking about this very subject. I would want to know especially the GENDER of the monozygotic twins in a particular study. Have you ever heard of X-inactivation? That is in females. We only need one X chromosome and the other one just "inactivates" itself and has very little gene expression coming from it. It can be seen as a blob at the edge of the nucleus using stain and a standard microscope on the "oil" setting. Quite fascinating. If, as it has been suggested in one of the videos, that at least one scoliosis "gene" is X-linked. You would see that not all of the monozygotic girls would get scoliosis unless both X's had a bad allele. X-inactivation is completely random and occurs sometime in early embryonic developement, if my memory serves me well. Boys, on the other hand, have only one X and they need it (assuming they don't have a multiple X syndrome of some type). So in the male monozygotic twin population, you would expect to see BOTH twins suffer from scoliosis 100% of the time (outside factors excluded), if it is in fact X-linked. There may be other genes that are autosomal (not on a sex chromosome) and in these cases, environment, as Dingo has suggested would be the deciding factor for gene expression. Pnuttro can chime in here and correct me at any time!!
    Yes and I think it is called Lyonization. Different x-chromosomes become activated in each twin and can account for large differences including that one has a genetic disease and the other doesn't. That last bit blows the minds of some folks because the kids are identical.

    The putative Jamaica "AIS" increase is almost certainly not related to the AIS sensu stricto that accounts for a fairly constant 2-4% rate in the US and likely the rest of the world. If they were the same then we would be seeing similar excursions up and down in other places. While many places have no data, I think we have enough data on enough places to say the Jamaica "epidemic" is completed unrelated to the typical AIS case and proves nothing w.r.t. an environmental trigger for AIS cases everywhere else and at all other times. Also, we need to consider that the Jamaica case is just a reporting change, not an AIS incidence change as far as I can tell. One guy reported it and I can't find anyone else publishing a verification so it may not even be real.

    The constancy of AIS rates in space and time suggests that if there is an environmental trigger, it is ubiquitous and therefore ineradicable. So the best hope defaults to genetics.

    Lots and lots of red herrings get thrown around in this sandbox because we only have a few people with any relevant training.

    I've invited my friend, who is a PhD Molecular Biologist to lunch. I will definitely be bringing this up to see what she thinks. Her forte is cell division, but I'm sure she will have some very good insight.
    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."

  12. #57
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    Quote Originally Posted by mamamax View Post
    Post surgical pain is a confusing topic. I read the surgical boards quite a bit. This is something both surgeons and patients struggle with. As I have said before, as someone with scoliosis - surgery could always be in my future (a fact I cannot ignore), so - while my heart and soul is engaged in the non surgical ... I try to keep an eye on the surgical as well since at this time, medical science is at a loss to accurately predict my future. And I do wonder what the continued information gathered by Scoliscore may offer all patients as data is collected and analyzed - hopefully patients will be followed throughout their lifetimes.

    Some who undergo spinal fusion report being pain free. And some report continued pain, even though fusion is solid and instrumentation successful. So - barring instrumentation or fusion failure, sometimes, post surgical pain is still an issue - why? Sometimes non surgical methods prove most promising, and other times a complete failure - why?



    Some published articles indicate that when instrumentation is removed - that there are times when a fused spine will progress. Why is that? Could all these questions be answered by knowing the genetic predisposition to progress throughout a lifetime?

    That is my question. If there is any truth in the theory, then this may prove as a guide regardless of treatment option.

    If the theory is correct - this also has application to explaining bracing (and other non surgical) failures and/or successes.

    In any case, I think there is a need to know regarding the prediction of progression in the mature spine. And maybe Scoliscore will be able to provide that information, provided data is collected, analyzed and patients followed throughout their lifetimes.

    We may find that those with low to intermediate Scoliscores fair better regardless of treatment options due to a lack of genetic predisposition to progress? That would be very valuable information in making our decisions in treatment options.
    I'm trying to find where Pooka1 gave a good explanation of this. Can't find it, but it sums up to the fact that juveniles have flexible spines. As we grow older, the bend in the spine causes damage. As the adult spine stiffens and damage increases, pain can occur. After doing surgery on an adult, the "damage" that was generated over years of having the deformity is likely the cause of the pain. Maybe some people just have less damage from their deformity. If the damage isn't severe, then they have a better outcome.

    This is kind of a weird way to think of it. But in the US it is common decency for most women to wear a bra, if they are able, as it is viewed as obscene to show the nipple. The results of wearing a bra over years of time are that adhesions form to actually make the breast keep its shape (I learned this in Lamaze class). In order for a mother to nurse easier, it is to her advantage to pull gently on the breast and break some of those adhesions (again, according to my Lamaze instructor). If this is true of the breast, could it not be true of the spine, and how much more so! The body does all kinds of things to try to stabilize itself, including creating new tissue. I have, for example a massive muscle on one side of my neck, and practically no muscle on the other. It's a fact. My body grew tissue to be able to hold my head up since it comes out of my shoulder girdle at about a 46* angle. Now you go and straighten the spine that has grown all this extra tissue, and lacks tissue in vital areas. I would expect some would get pain. I think it would be an individual thing. Just my thought on that one.

  13. #58
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    Oh, not to mention uneven wear on the disks, spinal degeneration and things lilke that.

  14. #59
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    Quote Originally Posted by rohrer01 View Post
    I'm trying to find where Pooka1 gave a good explanation of this. Can't find it, but it sums up to the fact that juveniles have flexible spines. As we grow older, the bend in the spine causes damage. As the adult spine stiffens and damage increases, pain can occur. After doing surgery on an adult, the "damage" that was generated over years of having the deformity is likely the cause of the pain. Maybe some people just have less damage from their deformity. If the damage isn't severe, then they have a better outcome.

    This is kind of a weird way to think of it. But in the US it is common decency for most women to wear a bra, if they are able, as it is viewed as obscene to show the nipple. The results of wearing a bra over years of time are that adhesions form to actually make the breast keep its shape (I learned this in Lamaze class). In order for a mother to nurse easier, it is to her advantage to pull gently on the breast and break some of those adhesions (again, according to my Lamaze instructor). If this is true of the breast, could it not be true of the spine, and how much more so! The body does all kinds of things to try to stabilize itself, including creating new tissue. I have, for example a massive muscle on one side of my neck, and practically no muscle on the other. It's a fact. My body grew tissue to be able to hold my head up since it comes out of my shoulder girdle at about a 46* angle. Now you go and straighten the spine that has grown all this extra tissue, and lacks tissue in vital areas. I would expect some would get pain. I think it would be an individual thing. Just my thought on that one.
    Maybe I'm not using the correct terminology? Actually, what I'm trying to understand is - whether or not an individual has a pre-programmed genetic predisposition for curvature. Like each of us has a genetic predisposition to achieve our maximum standing height at maturity.

    In other words - could I have a genetic predisposition to a given curvature (cobb angle). And if so, then say my spine was fused before it reached that genetic goal ... would the spine still try to reach that goal (even though it couldn't), trying to do so (fused) may be painful just as a matter of physics?


  15. #60
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    Quote Originally Posted by mamamax View Post
    In other words - could I have a genetic predisposition to a given curvature (cobb angle). And if so, then say my spine was fused before it reached that genetic goal ... would the spine still try to reach that goal (even though it couldn't), trying to do so (fused) may be painful just as a matter of physics?
    I don't see how any predisposition to a certain Cobb angle could possibly matters after fusion assuming no pseudoarthrosis. As a matter of material science (bone).
    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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