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.
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Yes Rorher, I understand what you say, certainly I should have realize that the Sharon’s 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 I’m thinking (even I accept that I may be missing something because I didn’t 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 people’s 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 don’t know what kind of calibration may need, but anyway, that kind of test should have to be done and constantly should to be tested.
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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!
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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).
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|Originally posted by flerc View PostAll 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).Last edited by flerc; 06-20-2012, 12:43 PM.
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Originally posted by flerc View PostIt seems to be constructed in that way (old people should have to be selected), but how it was TESTED?Be happy!
We don't know what tomorrow brings,
but we are alive today!
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Originally posted by rohrer01 View PostI 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.
Originally posted by rohrer01 View PostI 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.
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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
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Originally posted by hduggerTo 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.
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Originally posted by LindaRacine View PostLike 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.
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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!
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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
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Originally posted by rohrer01 View PostHow do you know that it wasn't properly tested?
Originally posted by flerc View PostSorry if I’m 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.
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 thatOriginally posted by LindaRacine View PostLike 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.
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