Which clinical trial are you in?

[dasjsmum]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

<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.</end quote></div>

yes, that's exactly what I thought too <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

<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.</end quote></div>

yes, that's exactly what I thought too <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

<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.</end quote></div>

yes, that's exactly what I thought too <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

<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.</end quote>

yes, that's exactly what I thought too <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dasjsmum]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>
<br />
<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 />
<br />
<br />That's actually not true.
<br />
<br />
<br />
<br />Many companies release the results of clinical trials well before submitting approval requests to the FDA or receiving FDA approval.
<br />
<br />
<br />
<br />This happens all the time with drugs that are in trial.
<br />
<br />
<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 />
<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 />
<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 />
<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.</end quote>
<br />
<br />yes, that's exactly what I thought too <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kmaried</b></i>



Maybe it has less to do with the integrity of the trial results and more to do with the company financials...</end quote></div>


you, my friend, are very smart. <img src="i/expressions/face-icon-small-smile.gif" border="0"> you hit the nail on the head.

the other issue is if people aren't seeing the efficacy of the drug that they had hoped, that might discourage others from joining the study.

so this is non-financial and study related. and i see their POV for sure there.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kmaried</b></i>



Maybe it has less to do with the integrity of the trial results and more to do with the company financials...</end quote></div>


you, my friend, are very smart. <img src="i/expressions/face-icon-small-smile.gif" border="0"> you hit the nail on the head.

the other issue is if people aren't seeing the efficacy of the drug that they had hoped, that might discourage others from joining the study.

so this is non-financial and study related. and i see their POV for sure there.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kmaried</b></i>



Maybe it has less to do with the integrity of the trial results and more to do with the company financials...</end quote></div>


you, my friend, are very smart. <img src="i/expressions/face-icon-small-smile.gif" border="0"> you hit the nail on the head.

the other issue is if people aren't seeing the efficacy of the drug that they had hoped, that might discourage others from joining the study.

so this is non-financial and study related. and i see their POV for sure there.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kmaried</b></i>



Maybe it has less to do with the integrity of the trial results and more to do with the company financials...</end quote>


you, my friend, are very smart. <img src="i/expressions/face-icon-small-smile.gif" border="0"> you hit the nail on the head.

the other issue is if people aren't seeing the efficacy of the drug that they had hoped, that might discourage others from joining the study.

so this is non-financial and study related. and i see their POV for sure there.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kmaried</b></i>
<br />
<br />
<br />
<br />Maybe it has less to do with the integrity of the trial results and more to do with the company financials...</end quote>
<br />
<br />
<br />you, my friend, are very smart. <img src="i/expressions/face-icon-small-smile.gif" border="0"> you hit the nail on the head.
<br />
<br />the other issue is if people aren't seeing the efficacy of the drug that they had hoped, that might discourage others from joining the study.
<br />
<br />so this is non-financial and study related. and i see their POV for sure there.

 

[crystalina0814]

Out of curiosity. If you buy stock, and also participate, or have a child who participates in a medical study from that same company...is this insider trading? Even though no information is disclosed to you and the study is double blind?

 

[crystalina0814]

Out of curiosity. If you buy stock, and also participate, or have a child who participates in a medical study from that same company...is this insider trading? Even though no information is disclosed to you and the study is double blind?

 

[crystalina0814]

Out of curiosity. If you buy stock, and also participate, or have a child who participates in a medical study from that same company...is this insider trading? Even though no information is disclosed to you and the study is double blind?

 

[crystalina0814]

Out of curiosity. If you buy stock, and also participate, or have a child who participates in a medical study from that same company...is this insider trading? Even though no information is disclosed to you and the study is double blind?

 

[crystalina0814]

Out of curiosity. If you buy stock, and also participate, or have a child who participates in a medical study from that same company...is this insider trading? Even though no information is disclosed to you and the study is double blind?

 

[izemmom]

Emily's going to be doing her first clinical trial. It is a study to help "approve" the use of HTS in infants (under age 6). She has been taken off of HTS for a month, then we will receive either 7% like she uses now, or an isotonic saline. The study lasts a year. We've loved the results of HTS for her, and I'm glad we can participate in this study which will hopefully make it more widely available for young childern. Oh, and we get free albuterol and the study drug for a year, along with new neb cups! Not a bad exchange for filling out some questionairres and a few extra visits!

I'm excited that she is nearing the age where she'll be eligible for more studies!

 

[izemmom]

Emily's going to be doing her first clinical trial. It is a study to help "approve" the use of HTS in infants (under age 6). She has been taken off of HTS for a month, then we will receive either 7% like she uses now, or an isotonic saline. The study lasts a year. We've loved the results of HTS for her, and I'm glad we can participate in this study which will hopefully make it more widely available for young childern. Oh, and we get free albuterol and the study drug for a year, along with new neb cups! Not a bad exchange for filling out some questionairres and a few extra visits!

I'm excited that she is nearing the age where she'll be eligible for more studies!

 

[izemmom]

Emily's going to be doing her first clinical trial. It is a study to help "approve" the use of HTS in infants (under age 6). She has been taken off of HTS for a month, then we will receive either 7% like she uses now, or an isotonic saline. The study lasts a year. We've loved the results of HTS for her, and I'm glad we can participate in this study which will hopefully make it more widely available for young childern. Oh, and we get free albuterol and the study drug for a year, along with new neb cups! Not a bad exchange for filling out some questionairres and a few extra visits!

I'm excited that she is nearing the age where she'll be eligible for more studies!

 

[izemmom]

Emily's going to be doing her first clinical trial. It is a study to help "approve" the use of HTS in infants (under age 6). She has been taken off of HTS for a month, then we will receive either 7% like she uses now, or an isotonic saline. The study lasts a year. We've loved the results of HTS for her, and I'm glad we can participate in this study which will hopefully make it more widely available for young childern. Oh, and we get free albuterol and the study drug for a year, along with new neb cups! Not a bad exchange for filling out some questionairres and a few extra visits!

I'm excited that she is nearing the age where she'll be eligible for more studies!

 

[izemmom]

Emily's going to be doing her first clinical trial. It is a study to help "approve" the use of HTS in infants (under age 6). She has been taken off of HTS for a month, then we will receive either 7% like she uses now, or an isotonic saline. The study lasts a year. We've loved the results of HTS for her, and I'm glad we can participate in this study which will hopefully make it more widely available for young childern. Oh, and we get free albuterol and the study drug for a year, along with new neb cups! Not a bad exchange for filling out some questionairres and a few extra visits!
<br />
<br />I'm excited that she is nearing the age where she'll be eligible for more studies!