How do you volunteer for the VX809 phase III trial

[baseballfrank]

How does one submit their name to be included in the VX809 phase III trial. I emailed repeatedlyall the appropiate names that were given as contacts for the phase II study. I never heard anything until I was told the study was closed and that they had enough participants.
so my question really is how do you get the inside track to get in on this? I am a perfect candidate for this study. I am 51 with 2 copies of F508. I am fairly healthy but over the last 10 years my health and my frequency of infections has changed dramatically. My main problem is volume of mucous in my lungs. I have no problem getting it out through nebulized treatments and exercise. the problem is the amount of phlegm is so volumious, is that I spend most of my days coughing and bringing stuff up. My FEV's aren't too bad. 50-60%.
So I think I would be perfect for testing to see how effective this drug really is. How do I get the word across to the decision makers. Do I have to lobby? Get letters of recommendation? Is there anybody else to contact besides the standard contact names on the CF website?
My contact for the closest study to me in Stanford is sick of getting my inquiries. Unfortunatly I have no other avenues to try.
Any help would be appreciated.

 

[Jeana]

Honestly, my CF doctor is the one who has always recruited me for drug studies, but his wife is the drug study coordinator for our clinic. What does your Cf doctor/clinic say?

 

[baseballfrank]

to date she has not been helpful at all but I have not persued this avenue agressively. Is that the way to do it. She is part of Kaiser in So Cal and the nearest clinical trial is in Northern Cal. But I am willing to travel. Not sure if Kaiser keeps her from doing anything.
All I have tried so far is contacting the trial coordinator which has not worked. She responds to me but not with the news I want to hear.

 

[musclemania70]

they may be full already. try contacting any other of the trial sites. Let them know you are willing to travel and see if you can get any more info.

It might be too early as well. I remember when I was trying to get into the phase 2 it took a while for them to get back to me. They were SLAMMED with phone calls, emails and requests for information about this trial. Especially since it was just announced they are going ahead with the next phase.
You may need to just give it some time.

 

[Aboveallislove]

What about doing phase 2 for 661? Suppose to be better drug and then might have better chance to do phase 3 with 661

 

[baseballfrank]

Thanks for all the responses. I am happy to report that this time I am having more success. I am applying for the VX809/Kalydeco phase III trial at Stanford. I have received a response back from them and they told me exactly what to do. I need to submit my medical records to them and then wait and see. Hopefully I will be accepted. I am so excited!

 

[JENNYC]

Best of luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[moxie1]

Are they saying if the 809 is going to be open-label?

Becki

 

[stubsgem]

So are you saying they are recruiting for Phase 3 of VX809? If so, who did you contact? Do you have any information on the criteria for the study? I was just looking at the available trials and I don't see the phase 3 listed. My husband and I are very, very interested so any information you can provide would be greatly appreciated.

 

[musclemania70]

phase 3 has not started yet. next year.

 

[baseballfrank]

It depends on where you live. I am applying to the one at Stanford. I live in Southern California and this one is the closest to my house. I have been bugging the contact there Colleen Dunn for over a year. She knows my emails. This time when I inquired, she responded and told me what to do. where do you live?