Why do you do/not do clinical trials for CFF?

[littledebbie]

In regards to the DNASE issue, i tried DNASe once as a teen and found it very irritating and it decreased my PFT's. However in using it later in my 20's I found it to help, I still haven't figured that out...?<br><br>As far as why i don't participate in studies? well as a kid I was open to it but no one ever needed me, I was evaluated for a prednisone trial as a kid but they didn't pick me. And now no one asks me. I was asked to give blood once by a student doing some paper or something once and I did say no to that because well I don't really like having need less bloodwork and it was just for her homework which I think it's a little crazy to think people are going to get blood drawn for your homework assignment. if she had asked and it happened to be a day I was gettting labs done anyway...I probably would have given her a tube <img src="i/expressions/face-icon-small-wink.gif" border="0"><br><br>Maybe they need to do a little better getting the word out? Not trying to critize, i'm just saying we can't help if we don't know where or how....

 

[gsplover]

I have done several clinical trials. I did one for gene therapy which was pretty cool to be part of. It was very time consuming. I had to go to Boston a lot. I also had to have scopes of my lungs done. The study lasted about a year. I also did one for a nebulized drug. Not sure what that was, it was a while ago. I did a few little trials for my cf clinic. They were just simple studies. Then the last one I did was the aztreonam trial. I got pulled from it because I had a flare up of my Staph not related to the drug but they couldn't start me on 2 drugs at once because they wouldn't know which drug was working. A lot of time there are strict peramitors that needs to be followed. They look at things like PFTs, weight and medications you are on, etc. Drug companies don't want to jeopardize someone's health. Plus you need to agree on the drug companies restrictions. When I was on the Gene Therapy trial I had to sign a contract that I wouldn't try to conceive for 2 years. I will keep doing clinical studies as long as they feel I am healthy enough to participate.