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aterry
06-22-2010, 06:23 PM
I saw this posted on clinicaltrials.gov. Apologies if someone has already posted about this:

http://www.clinicaltrials.gov/ct2/show/NCT00854828?term=scoliosis&rank=2

LindaRacine
06-22-2010, 08:43 PM
That is the Adult Deformity Outcome study, which I'm sure many of you are enrollees. It's the main study on which I work at UCSF.

aterry
06-23-2010, 09:24 AM
Perhaps the study has different names on different sites but this is the title at clinical trials.org:

A Multicenter Prospective Study of Quality of Life in Adult Scoliosis (ASLS)

UCSF is not one of the sites mentioned. Here are the sites in the posting:

Washington University School of Medicine
Collaborators: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Northwestern University
New York University
University of Virginia
University of Louisville
Dartmouth-Hitchcock Medical Center

LindaRacine
06-23-2010, 10:40 AM
Hi...

I think it's the same thing, as I can't imagine why they would have started two cohorts with the same goal. I suspect that the study has morphed, over time, into the ADO. Registering the trial with clinicaltrials.gov is one of the first things we have to do in order to get approval for this type of study.

Either way, if you're being seen by any university that's participating in this sort of study, I'd definitely encourage everyone to participate. These studies will definitely help future patients make informed decisions about their treatment.

Regards,
Linda

skevimc
06-23-2010, 11:14 AM
Hi...

I think it's the same thing, as I can't imagine why they would have started two cohorts with the same goal. I suspect that the study has morphed, over time, into the ADO. Registering the trial with clinicaltrials.gov is one of the first things we have to do in order to get approval for this type of study.

Either way, if you're being seen by any university that's participating in this sort of study, I'd definitely encourage everyone to participate. These studies will definitely help future patients make informed decisions about their treatment.

Regards,
Linda

Does the UCSF study also offer the surgical intervention arm?

LindaRacine
06-23-2010, 02:18 PM
Does the UCSF study also offer the surgical intervention arm?

Yes. These studies are part of the Spinal Deformity Study Group. I think there are 30-40 sites participating in some are all of the arms. The arms in which UCSF is involved are ADO non-op, ADO operative, Spondylolisthesis non-op, Spondylolisthesis operative, PPSS (pediatric scoliosis), and PPKS (pediatric kyphosis).

rohrer01
06-23-2010, 02:53 PM
This is interesting. I'm wondering if there are any studies for thoracic only curves?

jrnyc
06-23-2010, 03:10 PM
i dont understand, rohr...i'd think it best that they include all curves...??

jess

rohrer01
06-23-2010, 04:13 PM
i dont understand, rohr...i'd think it best that they include all curves...??

jess

This particular study only wants people with lumbar or thoracolumbar curves. I have a double thoracic curve. I was just curious if anyone knew of a study. I would be interested in participating. :)

jrnyc
06-23-2010, 04:43 PM
oh...didnt know that...guess i qualify then...
sorry they dont have one that you qualify for :(

LindaRacine
06-23-2010, 09:16 PM
This particular study only wants people with lumbar or thoracolumbar curves. I have a double thoracic curve. I was just curious if anyone knew of a study. I would be interested in participating. :)

If you are seen by a university environment surgeon, you're fairly likely to be included in a study.

--Linda

rohrer01
06-23-2010, 09:59 PM
Yes, I was included in the Axial Biotech study. I was just wondering about the more hands on kind of stuff.

aterry
06-28-2010, 09:35 AM
According to the posting on Clinicaltrials.gov. http://www.clinicaltrials.gov/ct2/sh...oliosis&rank=2 Washington University and Northwestern University are recruiting but the other three, Univ. of Louisville, New York University and University of Virginia have not yet started recruitment. I plan to visit the link every now and then to see if there's an update. There is contact information, though, for each site so you could contact them and ask questions. I'm wondering, for instance, if the physical therapy they'll be evaluating is just standard approach or if it's targeted to scoliosis.

I go to clinicaltrials once a month or so to see if anything new has popped up. That's how I came across this one; before I hadn't seen anything on lumbar scoliosis for NYC. My daughter doesn't qualify for this study but I'm glad it's running. I also look for tinitus, which my husband has, and for a couple of things that friends are dealing with.

skevimc
06-28-2010, 12:29 PM
According to the posting on Clinicaltrials.gov. http://www.clinicaltrials.gov/ct2/sh...oliosis&rank=2 Washington University and Northwestern University are recruiting but the other three, Univ. of Louisville, New York University and University of Virginia have not yet started recruitment. I plan to visit the link every now and then to see if there's an update. There is contact information, though, for each site so you could contact them and ask questions. I'm wondering, for instance, if the physical therapy they'll be evaluating is just standard approach or if it's targeted to scoliosis.

I go to clinicaltrials once a month or so to see if anything new has popped up. That's how I came across this one; before I hadn't seen anything on lumbar scoliosis for NYC. My daughter doesn't qualify for this study but I'm glad it's running. I also look for tinitus, which my husband has, and for a couple of things that friends are dealing with.

As someone who works on clinical trials, I'd suggest contacting the site specific person directly rather than waiting for ClinicalTrials.gov to be updated. We are supposed to update the site whenever a change is made but I think the reality is that some of the information is somewhat outdated. Changes happen all the time and recruitment status changes and tweaks are made... etc... A clinical trial is as dynamic as the people it recruits. Don't be afraid to contact them. And if you get no response within a week or two, don't be afraid to contact them again.

LindaRacine
06-29-2010, 10:26 PM
I had a conversation with Chris Baldus today. She's the chief coordinator for the study in question, as well as for the ADO study. You were absolutely correct that this is a separate study. While it is not the same study, it's essentially the same audience, and the study will produce the same type of outcomes papers. I'm thinking that they probably applied for the NIH grant because the funding for our ADO study disappeared last Fall.

I apologize for the confusion.

--Linda

LindaRacine
07-30-2010, 10:47 PM
I have a little more information on this study because we've been asked to join the study. Interestingly, it's a randomized study. I'll be anxious to hear how that works. As a scoliosis patient, can you imagine going to see a surgeon and being told that they'd like to randomize you into the surgical or non-surgical arm? Most of our patients come in pretty much knowing that they already want surgery or not, and I think it will be difficult to convince a patient who wants surgery that they shouldn't have surgery, as well as the other way around.

Ballet Mom
08-01-2010, 06:08 PM
I have a little more information on this study because we've been asked to join the study. Interestingly, it's a randomized study. I'll be anxious to hear how that works. As a scoliosis patient, can you imagine going to see a surgeon and being told that they'd like to randomize you into the surgical or non-surgical arm? Most of our patients come in pretty much knowing that they already want surgery or not, and I think it will be difficult to convince a patient who wants surgery that they shouldn't have surgery, as well as the other way around.

Lol...that good old "evidence based" medicine. Have fun with that!