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View Full Version : Scoliscore - Jess's buddy Lonner and interesting comments



Pooka1
04-21-2010, 02:46 PM
I saw this posted on Fix's site...

http://www.scoliscore.com/patient-resources/PatientResources/PatientStories/tabid/500/Default.aspx

N.B. Lonner is a paid consultant for Scoliscore per the final credits on the video. I'd like to know whether he holds any Axial Biotech in his stock portfolio also.

Three points:

1. his opening statement is that scoliosis *is* a genetic condition point blank,

2. they are saying the test is for girls and boys though still only Caucasians between 9 and 13, and

3. by Federal law, the test can only be performed on order of a physician and the results can only be reported to the ordering physician.

This last point of course triggers the question of how Clear is able to perform the test and ever get the results back which I think they said they are doing.

LindaRacine
04-21-2010, 03:24 PM
I'd be surprised if Dr. Lonner didn't hold Axial Biotech stock. This is pretty standard in the industry, and is (NOW) always disclosed.

Pooka1
04-21-2010, 03:25 PM
I'd be surprised if Dr. Lonner didn't hold Axial Biotech stock. This is pretty standard in the industry, and is (NOW) always disclosed.

Well they said he was a paid consultant but if they said he held stock I missed it.

rohrer01
04-21-2010, 11:44 PM
I don't understand why only caucasians. It was stated in the video that most African Americans have a very HIGH percentage of caucasian genes. We are such a mixture of races anymore, I don't know if anyone can truly call themselves anything. I don't think this should have a racial boundary. Sorry, I think it's just wrong.

Pooka1
04-22-2010, 06:01 AM
I don't understand why only caucasians. It was stated in the video that most African Americans have a very HIGH percentage of caucasian genes. We are such a mixture of races anymore, I don't know if anyone can truly call themselves anything. I don't think this should have a racial boundary. Sorry, I think it's just wrong.

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.

jrnyc
04-22-2010, 06:02 AM
hmmmmm...i dont get why this is so awful....any more so than Dr Anand having a financial interest in the equipment they use during his minimal invasive surgery technique...i guess lots of doctors nowadays have financial interest in stuff related to their specialties...
could someone please explain what is so wrong with this...cause i am ignorant here...
i still like him for my surgeon! so i guess he is still my buddy :)

thanks
jess

Pooka1
04-22-2010, 06:08 AM
hmmmmm...i dont get why this is so awful....any more so than Dr Anand having a financial interest in the equipment they use during his minimal invasive surgery technique...i guess lots of doctors nowadays have financial interest in stuff related to their specialties...
could someone please explain what is so wrong with this...cause i am ignorant here...
i still like him for my surgeon! so i guess he is still my buddy :)

thanks
jess

NO! Not awful! I just want to know how much he likes it or whether it stops at getting paid to talk about it.

If he holds stock then maybe I want to hold stock. That's what I meant.

I mentioned Axial Biotech to my husband to investigate for our portfolio and I think if all these top surgeons hold boatloads of Axial Biotech stock then that might matter to our decision to hold or not and for how long.

jrnyc
04-22-2010, 06:17 AM
oh...OK...good...if the stock does well, maybe all you guys can benefit!
yeaaaaa Dr Lonner! :)

jess

Pooka1
04-22-2010, 06:22 AM
oh...OK...good...if the stock does well, maybe all you guys can benefit!
yeaaaaa Dr Lonner! :)

jess

From that video I can see why you like him as your surgeon. He has a very good manner about him. :)

jrnyc
04-22-2010, 06:30 AM
yup...i find him to be confident without being arrogant....compassionate and wise...great combination!

jess

mariaf
04-22-2010, 06:43 AM
hmmmmm...i dont get why this is so awful....any more so than Dr Anand having a financial interest in the equipment they use during his minimal invasive surgery technique...i guess lots of doctors nowadays have financial interest in stuff related to their specialties...
could someone please explain what is so wrong with this...cause i am ignorant here...
i still like him for my surgeon! so i guess he is still my buddy :)

thanks
jess

Jess,

You're right - it's very common from what I understand for doctors to have financial ties to some of the stuff related to their specialties. That alone would never sway my opinion of a doctor. I don't know Dr. Lonner personally but since he performs VBS I know some of the parents of his patients - and they (unanimously) adore him. His peers also seem to think the world of him. So he seems to have quite a few "buddies" out there :)

jrnyc
04-22-2010, 06:45 AM
thanks, mariaf...good to know others feel the same way that i do! :)

jess

mariaf
04-22-2010, 06:46 AM
yup...i find him to be confident without being arrogant....compassionate and wise...great combination!

jess

Funny, you also just decribed Dr. Betz perfectly :)

The two of them seem to have a very good professional relationship from what I can tell - and I can understand why.

Pooka1
04-22-2010, 03:14 PM
Okay Scoliscore is being marketed for Axial Biotech, Inc. by DePuy Spine, Inc. which is an operating company of DePuy, Inc. which is a Johnson & Johnson company.

So to play Scoliscore, all you can do is buy Johnson and Johnson.

http://www.investor.jnj.com/stock-information.cfm

joyfull
04-22-2010, 09:34 PM
Glad no one is questioning Dr. Lonner's integrity. I am scheduled for surgery with him on June 8th! This is a fascinating test. Is it routinely performed? My scoliosis was diagnosed at age 10 or 11. I wore a brace through "junior high," as it was called at the time, and it did nothing. I hope today's braces are more effective.

LindaRacine
04-22-2010, 10:37 PM
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

rohrer01
04-23-2010, 12:11 AM
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

jrnyc
04-23-2010, 12:41 AM
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

Pooka1
04-23-2010, 05:27 AM
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.

Pooka1
04-23-2010, 05:35 AM
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.

LindaRacine
04-23-2010, 09:57 PM
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

michael1960
04-24-2010, 07:59 AM
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.

rohrer01
04-24-2010, 03:01 PM
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.

Pooka1
04-24-2010, 03:14 PM
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.

rohrer01
04-24-2010, 04:16 PM
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.:confused:

Pooka1
04-24-2010, 08:25 PM
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.

rohrer01
04-25-2010, 12:37 AM
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.

Pooka1
04-25-2010, 10:20 AM
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.

LindaRacine
04-25-2010, 12:33 PM
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

rohrer01
04-25-2010, 01:12 PM
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!