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Thread: Scoliscore - Jess's buddy Lonner and interesting comments

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    You're right... race is a myth. We are all African. There are no sub-species within humans like there are in other species. Humans are remarkably well-mixed. I think Oglivie said there is a 60% overlap between Blacks and Caucasians. I thought it was higher so I might try to check him on that. People are generally so ignorant about this and a boatload of other science.

    Anyway the issue of thinking the test is only accurate with Caucasians triggers the question of whether they are indeed finding only AIS genes unless a different set of genes is responsible for AIS in non-Caucasians. I don't know whether they simply didn't test this with non-Caucasians or what because given the known high degree of mixing, I would expect it to work with the same accuracy in anybody.

    The most interesting question is if Clear is offering the test and getting the results back. That is against Federal law, they are not equipped to interpret it, and they don't have the relevant training to pursue the appropriate treatment. These are children we are talking about.
    My understanding is that the tests are only accurate for white females because they're the only group that has a statistically significant sample size. As they gain more males, and more ethnic females, they expect to add additional groups.

    --Linda

  2. #17
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    Quote Originally Posted by LindaRacine View Post
    My understanding is that the tests are only accurate for white females because they're the only group that has a statistically significant sample size. As they gain more males, and more ethnic females, they expect to add additional groups.

    --Linda
    That's fine. But, as it stands, if a 12 year old girl of color (any race other than caucasian) comes in to a clinic with a 23* curve, she is not eligible to even be given the test because of the color of her outsides! This just doesn't set well with me. I realize that there are ethnic diseases, like sickle cell, tay sachs, etc. but until they can prove that this is one of them, they should put their color blinders on. Maybe "Mormon" is an ethnicity (sorry I'm hung up on that one), in which case, growing up mormon, there are very few "blacks". I just can't see how, if someone of another race presents with a case, how they can be denied. ARGHHHH

  3. #18
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    well....first of all...is the test correct?...what percentage of the time is it correct?...if they test a young female (Caucasian)...how often are they accurate about curve progression...dont they have to follow girls for a long time to see if their curves EVER progress? sorry if i sound...ignorant...on this....but i am not clear on how they can be sure the curves never, ever get worse, unless they watch and re-measure the girls til they are much, much older....some of us didnt have larger curves til into our 30's or 40's or 50's....

    obviously, if the test is new, it hasnt been developed for all populations yet....

    jess

  4. #19
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    Quote Originally Posted by LindaRacine View Post
    My understanding is that the tests are only accurate for white females because they're the only group that has a statistically significant sample size. As they gain more males, and more ethnic females, they expect to add additional groups.

    --Linda
    Yes but if humans are well mixed as I read they are, if there is more variation within groups than between groups as I read there are, if there is a blending among groups and no distinct separation as I read there is, if the outward differences in appearance are accounted for by a vanishingly small fraction of the genes which I read they are,

    then

    if they are truly tracking AIS genes it would follow that it should apply with near equal accuracy and precision to all humans.

    We are all African.
    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. #20
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    Quote Originally Posted by jrnyc View Post
    well....first of all...is the test correct?...what percentage of the time is it correct?...if they test a young female (Caucasian)...how often are they accurate about curve progression...dont they have to follow girls for a long time to see if their curves EVER progress? sorry if i sound...ignorant...on this....but i am not clear on how they can be sure the curves never, ever get worse, unless they watch and re-measure the girls til they are much, much older....some of us didnt have larger curves til into our 30's or 40's or 50's....

    obviously, if the test is new, it hasnt been developed for all populations yet....

    jess
    This in my opinion, is the Achilles heel of the test. It only tries to predict whether the curve will be >40* at maturity as I understand it. But there is building evidence that simply being <40* at maturity is no sure ticket off the surgery table if not due to further progression then due to the ancillary damage from simply have a curve over the years.

    So my comment is even if it works as advertised, the endpoint that was surely driven by the data is not necessarily relevant to the interest of the patients. The >40* cutoff probably didn't just fall naturally out of the data set. I think they were balancing predictive ability with error which were going in opposite directions. I'm guessing the errors were unacceptably high when they tried to predict curves that only reached 30* or less at maturity. In the end, to gain a certain accuracy in the prediction, they had to raise the final angle at maturity to 40* which is arguably not useful for some, if not many, patients. Read the testimonials here.
    Last edited by Pooka1; 01-01-2011 at 02:14 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."

  6. #21
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    Quote Originally Posted by rohrer01 View Post
    That's fine. But, as it stands, if a 12 year old girl of color (any race other than caucasian) comes in to a clinic with a 23* curve, she is not eligible to even be given the test because of the color of her outsides! This just doesn't set well with me. I realize that there are ethnic diseases, like sickle cell, tay sachs, etc. but until they can prove that this is one of them, they should put their color blinders on. Maybe "Mormon" is an ethnicity (sorry I'm hung up on that one), in which case, growing up mormon, there are very few "blacks". I just can't see how, if someone of another race presents with a case, how they can be denied. ARGHHHH
    I'm not understanding your issue. They're not really denying anyone. They're just saying the test won't currently work for anyone but white bread females. If/when they get a sufficient sample size for other populations, the test will be made available to those groups. I'm not trying to defend them, but they're simply working with what they've got.

    --Linda

  7. #22
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    In one presentation from Dr. Ogilvie (Shriners Hospital) he states that the Caucasian group probably includes Hispanics and African-Americans. Especially African-Americans since they share about 60% of the DNA with Caucasians.

  8. #23
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    I guess I didn't know they only picked white females for their study. And if so, why? Plus, if someone of color did present in a doctors office with scoliosis, is the point going to get across to the doctor that they can administer the test, since we ALL share similar DNA. If they chose only white females to test, they must be assuming that this is a caucasian disorder, like sickle cell anemia is a black African disorder? I didn't know that they were looking at it in this light. I can understand that no one would waste grant money looking for the sickle cell genes in a white population, because, although it may be found occaisionally, (due to ancestral heritage that may or may not be known to the test subject) it certainly wouldn't be worth their while looking where it won't be found, unless, they were doing a study on population genetics and how genes get spread around. It's my ignorance. I didn't realize that this was considered a caucasian disorder. My apologies. I get upset when things take on an ethnic bias when it is not necessary.

  9. #24
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    My impression of the situation...

    1. They know that AIS is NOT limited to Caucasians.

    2. They are unsure if the identical set of 53 markers determined from a Caucasian set of patients is necessarily applicable to other groups (though I am baffled why it wouldn't be given how mixed humans are).

    3. This was not funded by the Government but rather by venture capital in Axial Biotech and Dupey Spine, Inc. (a company within Dupey, Inc. which itself is a Johnson & Johnson company).

    4. They picked Caucasian female girls within a certain age and curve range because that is the largest eventual market for the test and because they wanted to increase their odds of hitting the right markers by limiting the calibration to just this group.

    5. Though the test is likely applicable to other groups, they are not now claiming that.
    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. #25
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    Quote Originally Posted by Pooka1 View Post
    My impression of the situation...

    1. They know that AIS is NOT limited to Caucasians.

    2. They are unsure if the identical set of 53 markers determined from a Caucasian set of patients is necessarily applicable to other groups (though I am baffled why it wouldn't be given how mixed humans are).

    3. This was not funded by the Government but rather by venture capital in Axial Biotech and Dupey Spine, Inc. (a company within Dupey, Inc. which itself is a Johnson & Johnson company).

    4. They picked Caucasian female girls within a certain age and curve range because that is the largest eventual market for the test and because they wanted to increase their odds of hitting the right markers by limiting the calibration to just this group.

    5. Though the test is likely applicable to other groups, they are not now claiming that.
    If what you say is true, they should NOT be targeting white adolescent females because they will SELL more of their tests if they include everyone. How could a study so biased ever make it past peer review? I was included in the "study" and I am certainly NOT an adolescent. And as far as I'm concerned a marker is a marker, no matter the race. I've never heard of a DNA test being done to say the results are... 99.99% you ARE the father... Oh, wait a minute, you look like a different race than the child, so that invalidates the markers and voids the test. How stupid! I must really be missing something here.

  11. #26
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    Quote Originally Posted by rohrer01 View Post
    If what you say is true, they should NOT be targeting white adolescent females because they will SELL more of their tests if they include everyone.
    Here what I think is going on here...

    The largest market out there is young Caucasian females. By far.

    It costs millions and millions to develop the test.

    They will only be developing this test once.

    Therefore they calibrated it with as homogeneous a group as possible.

    I predict they will NOT be calibrating another test for any other group with 9600 samples because the return on that investment probably isn't there. This will likely not be an issue because I predict the present test will be shown to have the same utility for other groups as it is does for Caucasians.

    Just my opinion.
    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. #27
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    Quote Originally Posted by Pooka1 View Post

    I predict they will NOT be calibrating another test for any other group with 9600 samples because the return on that investment probably isn't there. This will likely not be an issue because I predict the present test will be shown to have the same utility for other groups as it is does for Caucasians.

    Just my opinion.
    They shouldn't HAVE to calibrate the test for other races, for crying out loud it's not like we're a bunch of different species here. Seems ridiculous. But, maybe more caucasians are afflicted by AIS. Some others have posted outbreaks of scoliosis in other areas of the world (Dingo, I believe) that were environmentally triggered. Maybe the test would not do any good in cases like these, and I'm thinking it wouldn't due to the fact that these cases wouldn't be classified as idiopathic, or familial. I still think they are being ignorant in not taking a better "random" sample to include everyone. I guess it's gonna be hard to change my opinion on that one. I don't think human DNA is that different that it would make any difference. Either the sequence is there, or it is not. Period.
    Thanks for trying to help me muddle through this one. I'm still working on lunch with my friend. I will ask her about "calibrating" DNA tests.

  13. #28
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    Quote Originally Posted by rohrer01 View Post
    They shouldn't HAVE to calibrate the test for other races, for crying out loud it's not like we're a bunch of different species here. Seems ridiculous.
    Yes but we are talking investors here who care about minimizing or eliminating any potential confounders in the calibration of the test. If you start with a more apparently homogenous group then you have better chance of finding this shotgun group of markers. They are not saying there definitely are confounders in a random sample but they simply don't want to take the chance with millions and millions going into it. They are hedging their bets in every way possible. Their money.

    But, maybe more caucasians are afflicted by AIS.
    I don't think so. I have read it has a worldwide incidence of 2-4% (not just in the US). That is very strong evidence for genetics which is probably why no serious researcher would say otherwise. It is universally accepted among researchers as far as I can tell.

    Some others have posted outbreaks of scoliosis in other areas of the world (Dingo, I believe) that were environmentally triggered. Maybe the test would not do any good in cases like these, and I'm thinking it wouldn't due to the fact that these cases wouldn't be classified as idiopathic, or familial.
    I question whether that is even real. One guy says so and nobody checked him as far as I can tell. Even if it is real, it is not AIS. It is hard for lay untrained people to know what is a red herring and what isn't. If you look at the Research area of this forum it is a trainwreck of red herrings.

    I still think they are being ignorant in not taking a better "random" sample to include everyone. I guess it's gonna be hard to change my opinion on that one. I don't think human DNA is that different that it would make any difference. Either the sequence is there, or it is not. Period.
    Thanks for trying to help me muddle through this one. I'm still working on lunch with my friend. I will ask her about "calibrating" DNA tests.
    I hope you report what your friend says on this. I like to learn what the people with training have to say. I suspect they would die 1,000 deaths reading some of the stuff on this forum seeing just how many ways there are to misunderstand things.
    Last edited by Pooka1; 04-25-2010 at 01:30 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."

  14. #29
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    Axial Biotech did not pick their cohort. The cohort came to them.

    I don't know this as a fact, but I'm guessing that they already know that their current sample size is insufficient for other ethnicities because they have been unable to validate the data for those groups. I attended an event at the last SRS meeting, much like the video that was referenced. I think they said that they modeled the test from half of their cohort, and then used the other half to validate. (If there's anyone out there who doesn't understand modeling, this means that they built the test using just half of the people. Then, they applied the test to the other half of the people (whose natural history they already knew), and found that they were able to accurately predict what would happen).

    Sharon, you could be right, that there's no enough potential in the other groups to bring additional ethnicities to market. But, at the event that I attended, they definitely said something about wanting to do so.

    --Linda

  15. #30
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    Quote Originally Posted by Pooka1 View Post

    I hope you report what your friend says on this. I like to learn what the people with training have to say. I suspect they would die 1,000 deaths reading some of the stuff on this forum seeing just how many ways there are to misunderstand things.
    I will report what she says. And yes, I think you are right on this one. Either that (1000 deaths) or fall over from a massive coronary laughing so hard! ...and probably at ME!

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