Page 6 of 13 FirstFirst ... 45678 ... LastLast
Results 76 to 90 of 183

Thread: The Axial Biotech Test is Here

  1. #76
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,255
    Fer, that was a joke about 3 or 4 men fathered all the children in the Mormon church. I was talking about polygamy which the Mormon Church reluctantly gave up in exchange for Utah becoming a state. But there are still large groups of Mormon polygamists walking around loose. Warren Jeffs, a leader of one, is now doing jail time for child rape or something along those lines. He married young teenagers. If you want to be a pedophile, the fundamentalist Mormon church is the place to be.
    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. #77
    Join Date
    Mar 2010
    Posts
    2,004
    Yes Rorher, I understand what you say, certainly I should have realize that the Sharonís joke not may be possible.. I know Mormons in my country (I had a good friend) and of course they cannot be descendents of those men. I was doubting about the quality of the sample to get the scolioscore, but anyway Iím thinking (even I accept that I may be missing something because I didnít read yet all this thread), that surely is not a predictive score model (as thousands used for differential applications) as I thought.

    That kind of models are also used in Risk Analysis and the concept is to determine the behavior of specifics entities, analyzing the history and determining in that way, the variables (which of those exactly, values, incidence..) leading to some specific behavior.
    Then the predictive model is used to anticipate the behavior of every entity belonging to the universe studied, only knowing the variables determined, whose values would be the input required to obtain an outcome (score) telling about the expected behavior.
    In this case, the entities would be peopleís spine, the variables would be genes and the behavior the progression.

    And of course, all predictive models are tested with the most recent data before use it, that is, some entities whose variables and behavior are known (and not forming part of the Data Base used to make the model) are evaluated under the model and then is known if the model was accurate about the outcome for those entities or not.
    This kind of models, in some areas need to be constantly checked, because for example, new variables not involved before may have now some kind of incidence, some scenarios changes..

    So if this would be the case of the scolioscore, it should have to be tested with samples (having and not scoliosis as I asked before) before use it. I donít know what kind of calibration may need, but anyway, that kind of test should have to be done and constantly should to be tested.

  3. #78
    Join Date
    Mar 2010
    Posts
    2,755
    Yes, it is my understanding that the test is meant to be predictive. Testing people with scoliosis and people without scoliosis is useless. There could be someone without scoliosis that tests very high, but never develops scoliosis. It only works once the process of the scoliosis had begun. Then those particular genes play a part in progression. What is the trigger that starts progression? No one knows for sure. I'm pretty sure that they looked at outcomes and compared the most frequent DNA sequences with the severe outcomes. Let's say everyone with a curve of 40* or more always have certain segments of DNA show up (yes, they used 40* as "severe" because they wanted to predict who would reach that angle or greater at or before skeletal maturity). Then a child comes in with AIS and has a scoliscore. IF that child has most or all of the markers that usually show up in larger curves, they will score high, meaning they have a great risk for progression and surgery may be considered sooner. That's how I understand it anyway. Also, high scoring individuals will usually NOT respond to bracing, so that saves them years of agony just to end up with surgery anyway. I'm sure Sharon will chime in here if I'm wrong. She is much more read on the Scoliscore than I am.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #79
    Join Date
    Mar 2010
    Posts
    2,004
    All predictive score models may and must to be tested with existent data (not forming part of the data base used to construct the model) whose behavior is already known, otherwise it would be only a matter of faith to trust in that model.
    In this case, the sample to test the scolioscore should be done with adults with small and big curves so scoliosis process has begun in all of them. In people with few degrees stopped (the score should be low) and in others not until so many degrees where reached (the score should to be high).

  5. #80
    Join Date
    Mar 2010
    Posts
    2,755
    As far as I know, that is how it was constructed. In my case, no one thought mine would progress, or at least not much.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  6. #81
    Join Date
    Mar 2010
    Posts
    2,004
    It seems to be constructed in that way (old people should have to be selected), but how it was TESTED?

  7. #82
    Join Date
    Mar 2010
    Posts
    2,004
    |
    Quote Originally Posted by flerc View Post
    All predictive score models may and must to be tested with existent data (not forming part of the data base used to construct the model) whose behavior is already known, otherwise it would be only a matter of faith to trust in that model.
    In this case, the sample to test the scolioscore should be done with adults with small and big curves so scoliosis process has begun in all of them. In people with few degrees stopped (the score should be low) and in the others not until so many degrees where reached (the score should to be high).
    I believe that if that test was not done for some serious and and impartial Organization, parents should to be advised. Is good to have faith in God, Saints, some Religion, but in a Company doing a great bussiness???
    Last edited by flerc; 06-20-2012 at 01:43 PM.

  8. #83
    Join Date
    Mar 2010
    Posts
    2,755
    Quote Originally Posted by flerc View Post
    It seems to be constructed in that way (old people should have to be selected), but how it was TESTED?
    I don't agree. There should be young people with already severe curves that would be as useful, if not more useful than old people. Older people sometimes progress due to age related degeneration on an already crooked spine. So this progression may have nothing to do with the genetic component of this disease. I don't think this company has any ulterior motives, at least not any more than any other company. They research to create a useful and marketable product that helps in the management of scoliosis. If money is made, that is not a bad thing. Think of how much a brace costs... Money pays for the time of the researchers. It pays for the company to keep going. It doesn't make them unreliable monsters. If I took the time to get a Ph.D., then I would expect to get paid for my services, too, even though I would be researching the things I thought would be helpful in improving lives.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #84
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by rohrer01 View Post
    I don't agree. There should be young people with already severe curves that would be as useful, if not more useful than old people. Older people sometimes progress due to age related degeneration on an already crooked spine. So this progression may have nothing to do with the genetic component of this disease.
    May be but, as I interpreted you was suggesting, young people with small curves may be not the best.

    Quote Originally Posted by rohrer01 View Post
    I don't think this company has any ulterior motives, at least not any more than any other company. They research to create a useful and marketable product that helps in the management of scoliosis. If money is made, that is not a bad thing. Think of how much a brace costs... Money pays for the time of the researchers. It pays for the company to keep going. It doesn't make them unreliable monsters. If I took the time to get a Ph.D., then I would expect to get paid for my services, too, even though I would be researching the things I thought would be helpful in improving lives.
    ?????? Where I have said something like that??. What I'm saying is that ALL PREDICTIVE SCORE MODELS MUST TO BE TESTED!! Do you not agree? Otherwise trust in them would be only a matter of faith. They are receiving a pay to do it (nobody is saying is bad), enough reason to do it, so which would be the reason of that faith? I saw many predictive score models in my life and it would be the first time I heard something like that. How clients may trust in them if THEY ARE NOT CORRECTLY TESTED? Tell me, maybe is all a confusion because my lack of imagination.

  10. #85
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,003
    Like any good study, they used half the database to build the model, then applied the model to the other half of the database, and found it to be in the high 90 percents in terms of accuracy.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  11. #86
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by hdugger View Post
    To the best of my knowledge, the only use of the Scoliscore test is to predict whether or not a child is likely to progress into the surgical range (40+ degrees) by maturity.
    And why are you sure that works in that case? What kind of test was done to be sure about how accurate is? I'm missing something? A test as I suggested was done?

  12. #87
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by LindaRacine View Post
    Like any good study, they used half the database to build the model, then applied the model to the other half of the database, and found it to be in the high 90 percents in terms of accuracy.
    That's what I was asking. I imagine it was done or supervised by some Organization and it's continuosly tested with known data.

  13. #88
    Join Date
    Mar 2010
    Posts
    2,755
    How do you know that it wasn't properly tested? I don't ever recall reading that young patients with small curves were used in collecting the DNA samples used in developing this test. I guess that's why I made the assumption that I did about ulterior motives (money making). It's my understanding that they did extensive testing before releasing the test for public use. Also, by trying the test out on the public, they continue to collect data that will either confirm or negate that accuracy of this test. By having a scolicore done, there is NO RISK to the patient except for the risks involved with any blood draw. Data is being collected on all kinds of medical devices and drugs even after release to the public.

    Treatment is ultimately decided upon by a collaboration between the doctor, parent, and patient (hopefully) and not based solely on the results of this test. For example, if a patient tests really high for progression, the parent may still want to brace their child. The scoliscore may indicate that the patient's scoliosis will progress regardless of bracing, but that does not mean that the parents and doctors should do nothing. Exercise and diet are always good for everyone, so this should always be implemented in any treatment plan. Bracing may be used to try to hold a curve until the child has had enough growth time to gain most the their skeletal maturity before surgery instead of having surgery before growth is complete or near complete. Sometimes, surgery may not be avoidable in adolescents with very low risser if they are progressing very rapidly. Scoliscore is just a tool to help evaluate the risk of progression. It doesn't take the place of treatment.

    On the other hand, if the patient test really low for possible progression, they should still be monitored. If they do progress, bracing may still be considered. BUT, if progression is very slow and the child never reaches, say 30* (for the sake of argument), why put them through the pain of a brace? This doesn't mean that the physician and parents can't choose bracing as an option. It just might mean that there may not be a need for it. There may not be a need for super frequent x-rays, saving them from exposure. If the parent isn't comfortable with that. They certainly can ask for more strict monitoring despite a low Scoliscore.

    In the end, it's just a tool. It can be used in deciding treatment options, but doesn't have to be considered when deciding treatment.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  14. #89
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    My 3 kids and I were all included in this study. My kids all have small curves, I had the gigantic ones

    Jesse, my middle son, had such a great sample that the Alial people had him send additional DNA 2x. They wouldn't tell me what was so 'special' about his vs. 2 siblings, but they said it was very 'exciting.' The 2nd time they even sent him a gift card.

    I've said this here before--maybe even on this thread--that I wonder if he has the genes that will make him progress due to their interest in his samples.

    He's 19 yrs old now and I will continue to watch him.
    __________________________________________
    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. #90
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by rohrer01 View Post
    How do you know that it wasn't properly tested?
    Did you read my first question in this thread?

    Quote Originally Posted by flerc View Post
    Sorry if Iím asking something well known. That kind of test was tested in an objective way? That is, testing samples of 2 groups of adults: having and not having scoliosis. Of course the test should to be done without knowing which sample belongs to each group.
    Yes, it seems I was asking about something well known.
    Read all what I post then, and say me when I said it wasn't properly tested. I was asking, not affirming. If you would have said me that
    Quote Originally Posted by LindaRacine View Post
    Like any good study, they used half the database to build the model, then applied the model to the other half of the database, and found it to be in the high 90 percents in terms of accuracy.
    (I suppose is exactly the test I was saying) I was not continuing asking the same.. in any case I would have asked about the Organization supervising that test, periodic test and so on, but not about if the right test was done or not.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •