Clinical Trials for Cystic Fibrosis

[tarheel]

I've done quite a few clinical trials- and now I'm starting one for a tobi vs azri (I think thats the abbreviaton) inhaled stuff trial. When I was little (well, obviously, because I dont remember much about the study itself) I did the study for Pulmozyme. It had no improvement for me- but in my opinion it really would be a shame to miss on any improvement you could get from these studies. I'll let you know (blog or otherwise) how the azri study goes.

 

[tarheel]

I've done quite a few clinical trials- and now I'm starting one for a tobi vs azri (I think thats the abbreviaton) inhaled stuff trial. When I was little (well, obviously, because I dont remember much about the study itself) I did the study for Pulmozyme. It had no improvement for me- but in my opinion it really would be a shame to miss on any improvement you could get from these studies. I'll let you know (blog or otherwise) how the azri study goes.

 

[tarheel]

I've done quite a few clinical trials- and now I'm starting one for a tobi vs azri (I think thats the abbreviaton) inhaled stuff trial. When I was little (well, obviously, because I dont remember much about the study itself) I did the study for Pulmozyme. It had no improvement for me- but in my opinion it really would be a shame to miss on any improvement you could get from these studies. I'll let you know (blog or otherwise) how the azri study goes.

 

[tarheel]

I've done quite a few clinical trials- and now I'm starting one for a tobi vs azri (I think thats the abbreviaton) inhaled stuff trial. When I was little (well, obviously, because I dont remember much about the study itself) I did the study for Pulmozyme. It had no improvement for me- but in my opinion it really would be a shame to miss on any improvement you could get from these studies. I'll let you know (blog or otherwise) how the azri study goes.

 

[tarheel]

I've done quite a few clinical trials- and now I'm starting one for a tobi vs azri (I think thats the abbreviaton) inhaled stuff trial. When I was little (well, obviously, because I dont remember much about the study itself) I did the study for Pulmozyme. It had no improvement for me- but in my opinion it really would be a shame to miss on any improvement you could get from these studies. I'll let you know (blog or otherwise) how the azri study goes.

 

[point]

I participated in a few when I was younger that my clinic new about at the time. I have also tried contacting three different trials to get more information in the last couple of years. A few were still posted on clinicaltrials.gov even though they were past recruitment - though no update on their individual webpages on the site. Also, I have had little to no response back from the trial contact for a recent study. So, while there are some of us who are very willing and interested in becoming involved, even though it has been said that participation is low, they may want to look back at the people who are orgainizing them to ensure that they are looking into all possible volunteers. My brother (who also has CF) had a similar response to the clinical trial contact for the last one we were both looking into earlier this year. Go figure, people are asking to participate and not getting any follow up.

Good luck Ronnie - hopefully you find a trial that you are interested in and all works out!
Take care,
Christina

 

[point]

I participated in a few when I was younger that my clinic new about at the time. I have also tried contacting three different trials to get more information in the last couple of years. A few were still posted on clinicaltrials.gov even though they were past recruitment - though no update on their individual webpages on the site. Also, I have had little to no response back from the trial contact for a recent study. So, while there are some of us who are very willing and interested in becoming involved, even though it has been said that participation is low, they may want to look back at the people who are orgainizing them to ensure that they are looking into all possible volunteers. My brother (who also has CF) had a similar response to the clinical trial contact for the last one we were both looking into earlier this year. Go figure, people are asking to participate and not getting any follow up.

Good luck Ronnie - hopefully you find a trial that you are interested in and all works out!
Take care,
Christina

 

[point]

I participated in a few when I was younger that my clinic new about at the time. I have also tried contacting three different trials to get more information in the last couple of years. A few were still posted on clinicaltrials.gov even though they were past recruitment - though no update on their individual webpages on the site. Also, I have had little to no response back from the trial contact for a recent study. So, while there are some of us who are very willing and interested in becoming involved, even though it has been said that participation is low, they may want to look back at the people who are orgainizing them to ensure that they are looking into all possible volunteers. My brother (who also has CF) had a similar response to the clinical trial contact for the last one we were both looking into earlier this year. Go figure, people are asking to participate and not getting any follow up.

Good luck Ronnie - hopefully you find a trial that you are interested in and all works out!
Take care,
Christina

 

[point]

I participated in a few when I was younger that my clinic new about at the time. I have also tried contacting three different trials to get more information in the last couple of years. A few were still posted on clinicaltrials.gov even though they were past recruitment - though no update on their individual webpages on the site. Also, I have had little to no response back from the trial contact for a recent study. So, while there are some of us who are very willing and interested in becoming involved, even though it has been said that participation is low, they may want to look back at the people who are orgainizing them to ensure that they are looking into all possible volunteers. My brother (who also has CF) had a similar response to the clinical trial contact for the last one we were both looking into earlier this year. Go figure, people are asking to participate and not getting any follow up.

Good luck Ronnie - hopefully you find a trial that you are interested in and all works out!
Take care,
Christina

 

[point]

I participated in a few when I was younger that my clinic new about at the time. I have also tried contacting three different trials to get more information in the last couple of years. A few were still posted on clinicaltrials.gov even though they were past recruitment - though no update on their individual webpages on the site. Also, I have had little to no response back from the trial contact for a recent study. So, while there are some of us who are very willing and interested in becoming involved, even though it has been said that participation is low, they may want to look back at the people who are orgainizing them to ensure that they are looking into all possible volunteers. My brother (who also has CF) had a similar response to the clinical trial contact for the last one we were both looking into earlier this year. Go figure, people are asking to participate and not getting any follow up.
<br />
<br />Good luck Ronnie - hopefully you find a trial that you are interested in and all works out!
<br />Take care,
<br />Christina

 

[RebekahsMom]

I have thought about the possibility of getting Bek involved in clinical trials if they have some here close to us, but at the same time I worry that it could involve a medication that may do her harm? I obviously want her to be as healthy as possible, but at the same time, I want to make sure she is protected. Anyone else out there with young cfer's who feel the same? Or have had their child involved in trials, and if so, how did it go?

 

[RebekahsMom]

I have thought about the possibility of getting Bek involved in clinical trials if they have some here close to us, but at the same time I worry that it could involve a medication that may do her harm? I obviously want her to be as healthy as possible, but at the same time, I want to make sure she is protected. Anyone else out there with young cfer's who feel the same? Or have had their child involved in trials, and if so, how did it go?

 

[RebekahsMom]

I have thought about the possibility of getting Bek involved in clinical trials if they have some here close to us, but at the same time I worry that it could involve a medication that may do her harm? I obviously want her to be as healthy as possible, but at the same time, I want to make sure she is protected. Anyone else out there with young cfer's who feel the same? Or have had their child involved in trials, and if so, how did it go?

 

[RebekahsMom]

I have thought about the possibility of getting Bek involved in clinical trials if they have some here close to us, but at the same time I worry that it could involve a medication that may do her harm? I obviously want her to be as healthy as possible, but at the same time, I want to make sure she is protected. Anyone else out there with young cfer's who feel the same? Or have had their child involved in trials, and if so, how did it go?

 

[RebekahsMom]

I have thought about the possibility of getting Bek involved in clinical trials if they have some here close to us, but at the same time I worry that it could involve a medication that may do her harm? I obviously want her to be as healthy as possible, but at the same time, I want to make sure she is protected. Anyone else out there with young cfer's who feel the same? Or have had their child involved in trials, and if so, how did it go?