I was in the phase II and phase III studies of AZLI...I had a big improvement in my PFTs while on the drug and felt great...I loved it! However, when the study was ended I had a lot of problems with resistance and a decline in my health that took me a long time to come back from. Whether or not this had anything to do with being on the AZLI is up for debate, but my doctor suspects that it might have. Because of this he won't allow me to apply for the expanded access program. I would like to get involved in another study but right now there doesn't seem to be anything that I qualify for.
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Which clinical trial are you in?
- Thread starter saveferris2009
- Start date
I was in the phase II and phase III studies of AZLI...I had a big improvement in my PFTs while on the drug and felt great...I loved it! However, when the study was ended I had a lot of problems with resistance and a decline in my health that took me a long time to come back from. Whether or not this had anything to do with being on the AZLI is up for debate, but my doctor suspects that it might have. Because of this he won't allow me to apply for the expanded access program. I would like to get involved in another study but right now there doesn't seem to be anything that I qualify for.
I was in the phase II and phase III studies of AZLI...I had a big improvement in my PFTs while on the drug and felt great...I loved it! However, when the study was ended I had a lot of problems with resistance and a decline in my health that took me a long time to come back from. Whether or not this had anything to do with being on the AZLI is up for debate, but my doctor suspects that it might have. Because of this he won't allow me to apply for the expanded access program. I would like to get involved in another study but right now there doesn't seem to be anything that I qualify for.
I was in the phase II and phase III studies of AZLI...I had a big improvement in my PFTs while on the drug and felt great...I loved it! However, when the study was ended I had a lot of problems with resistance and a decline in my health that took me a long time to come back from. Whether or not this had anything to do with being on the AZLI is up for debate, but my doctor suspects that it might have. Because of this he won't allow me to apply for the expanded access program. I would like to get involved in another study but right now there doesn't seem to be anything that I qualify for.
I was in the phase II and phase III studies of AZLI...I had a big improvement in my PFTs while on the drug and felt great...I loved it! However, when the study was ended I had a lot of problems with resistance and a decline in my health that took me a long time to come back from. Whether or not this had anything to do with being on the AZLI is up for debate, but my doctor suspects that it might have. Because of this he won't allow me to apply for the expanded access program. I would like to get involved in another study but right now there doesn't seem to be anything that I qualify for.
crystalina0814
New member
I just went through my consent form for the Vertex study -to refresh my memory on what is forbidden to discuss. It does state that we are not to discuss our personal results in any tupe of open forum, or public online place. We are however allowed to discuss it with friends, family and through any non-public place online such as e-mail. Interesting huh?
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
crystalina0814
New member
I just went through my consent form for the Vertex study -to refresh my memory on what is forbidden to discuss. It does state that we are not to discuss our personal results in any tupe of open forum, or public online place. We are however allowed to discuss it with friends, family and through any non-public place online such as e-mail. Interesting huh?
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
crystalina0814
New member
I just went through my consent form for the Vertex study -to refresh my memory on what is forbidden to discuss. It does state that we are not to discuss our personal results in any tupe of open forum, or public online place. We are however allowed to discuss it with friends, family and through any non-public place online such as e-mail. Interesting huh?
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
crystalina0814
New member
I just went through my consent form for the Vertex study -to refresh my memory on what is forbidden to discuss. It does state that we are not to discuss our personal results in any tupe of open forum, or public online place. We are however allowed to discuss it with friends, family and through any non-public place online such as e-mail. Interesting huh?
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
crystalina0814
New member
I just went through my consent form for the Vertex study -to refresh my memory on what is forbidden to discuss. It does state that we are not to discuss our personal results in any tupe of open forum, or public online place. We are however allowed to discuss it with friends, family and through any non-public place online such as e-mail. Interesting huh?
<br />
<br />Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
<br />
<br />Just thought I would share since it was brought up. I passed my screening and actually start Sept. 1. I am nervous and excited at the same time! I know I passed the screening, but I guess I am still unsure what the initial qualifications were. I think a certain FEV1 and BMI....not too sure what they were looking for though!
Thanks for the reminder Crystalina not to discuss the results of on going trials in open forums.
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Thanks for the reminder Crystalina not to discuss the results of on going trials in open forums.
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Thanks for the reminder Crystalina not to discuss the results of on going trials in open forums.
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Thanks for the reminder Crystalina not to discuss the results of on going trials in open forums.
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
Thanks for keeping this civil and on point.
Jeanne
Thanks for the reminder Crystalina not to discuss the results of on going trials in open forums.
<br />
<br />Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
<br />
<br />You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
<br />
<br />Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
<br />
<br />Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
<br />
<br />Thanks for keeping this civil and on point.
<br />
<br />Jeanne
<br />
<br />Answering the original question "Which Clinical Trial are you in" is different from discussing personal results of on going clinical trials in which you or your loved ones are participating.
<br />
<br />You are missing the idea of a clinical trial if you think you can openly discuss the results. The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved.
<br />
<br />Thanks again for reminding us to reread the Pharmaceutical company rules for participating in these important tests.
<br />
<br />Discussing the on going tests may invalidate the results, which I'm sure is not saveferris2009's point in starting this thread.
<br />
<br />Thanks for keeping this civil and on point.
<br />
<br />Jeanne
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote></div>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote>
That's actually not true.
Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
This happens all the time with drugs that are in trial.
The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
<br />
<br /> The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote>
<br />
<br />That's actually not true.
<br />
<br />Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
<br />
<br />This happens all the time with drugs that are in trial.
<br />
<br />The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
<br />
<br />Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
<br />
<br />Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
<br />
<br />Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
<br />
<br />
<br /> The test is suppose to be blind and the results are revealed to the government (FDA) and not to the public until it is approved. </end quote>
<br />
<br />That's actually not true.
<br />
<br />Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
<br />
<br />This happens all the time with drugs that are in trial.
<br />
<br />The New England Journal of Medicine, JAMA and many other journals publish these trials all the time. And with the internet, companies publish results on their own as well, well before submitting to the FDA.
<br />
<br />Also, when a study is blind, that means that the patient isn't supposed to know whether or not he or she is receiving the real drug or placebo.
<br />
<br />Posting on a forum your experience in a clinical trial has nothing to do with knowing whether or not you are on the drug. Unless the study manufacturer or coordinator tells you whether you're on the drug or not, you don't know for sure. And a forum certainly can't reveal that information to you - every patient has different results.
<br />
<br />Now, it's true at Vertex has clinical trial participants sign a waiver stating they won't speak about their clinical trial experience in a forum such as this. But to the best of my knowledge, no other company has had patients sign this agreement.
<br />