Nebraska Clinical Trial for Adults

[JohnnaMarie]

Hi there:

My younger brother has been offered the chance to do a clinical trial here in Nebraska that seems to be a long drug study. He goes to the Universtity of Nebraska Medical Center. He has mild CF and is in his early 20's. There was a pretty big price tag on the study like over 2 grand to do it. Last he told me he did not have a lot of info on it and was waiting to get more so he could decide if it was too risky or not. It makes a person wonder what it is all about and what they are going to do to you if you are getting that much $$$. Has anyone heard anything more on a drug study that might fit those paramaters. I have looked and looked on the web and cannot find anything on it. The only thing I found that might fit was a study involving serveral differant drugs at differant times. There was no criteria in that info that I found that was conclusive enough to know if that was the right study. Has anyone been approached about a study that might meet those parameters? My info may be too limited....

 

[anonymous]

The NIH clinical trials website shows 2 in Nebraska. one is for kids and one is for patients over 14 so maybe that's the one? It's sponsored by Parion and is for an inhaled sodium-blocker

<a target=_blank class=ftalternatingbarlinklarge href="http://www.clinicaltrials.gov/ct/show/NCT00274313?order=1">http://www.clinicaltrials.gov/...ow/NCT00274313?order=1</a>

 

[JennifersHope]

I am starting that study next week. It is inhaling a sodium-blocker, that is really all I know about it. I have mild CF as well and I know that even with all my other medical conditions, I qualify for the study.

I am a little leary about it because I have to add even more stuff to my already busy routine of nebs in the morning and evening, and with starting a new job and having to go to clinic so often, but I just couldn't say no. I feel like I need to do my part to help find more medcines.

I would love to talk to other people who are doing the study as well.

Jennifer

 

[NoExcuses]

Price tag sounds typical, Johnna. The CF Foundation is working very hard to compensate CF patients for their time and effort. Whereas the biggest obstacle to new meds used to be money, Dr. Beall, head of the CFF has stated the latest barrier to new meds for CF is finding volunteers for clinical trials. Money can often encourage people to participate. Keep us posted! This sounds very exciting.

 

[littletally]

I enjoy doing studies at the University of Minnesota. Not only does it make me some extra money but sometimes the thing they are studying can have an awesome effect and make you feel great for the time you are on it. Currently I have been involved with a study for inhaled aztreanam (sp?) and it is the best thing I have done! You guys will be totally excited when it is available to everyone! It's in the last phases of the study so maybe within a year or so it will be available. Of course I don't know for sure because Im not positive how this works. But I'm sure it will be outrageously expensive like all the other good drugs out there. But I suggest being involved in studies if at all possible. Not only could it help you but it can help all cfer's in the long run!

Nikki
26/f/cf

 

[JohnnaMarie]

Thank you for the info on it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I wonder how this sodium blocker affects the hypertonic saline that some are taking right now?? It may not even be the same type of sodium....i don't know. I was not offered the study ..i don't qualify for it. I am really glad to hear that CF patients are getting reimbursed well for their participation in studies. That is great.