Drug trials...NOT at your clinic

M

MCGrad2006

Guest
So Since 770 got approved I have been researching a bit. I had read on here that they are doing a trial for those patients with one copy of deltaF508...which I have...and N1303K as my other one. On CFF.org it lists the sites that are doing the 770/809, but my clinic is not listed. Childrens Boston is listed, but not MGH. Has anyone ever done a trial at another clinic? Did your doctor allow that? How did it work with your records? Did you have be evaluated at the new clinic? I am VERY interested in more information. Please let me know if you know anything. I should mention that...it did say that not all clinics doing the trial are listed, so MGH may be doing it. I have a clinic visit next week and will certainly be bringing this up, but would like to be armed with info! And if anyone specifically knows about Childrens version of the trial feel free to chime in or PM me.

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

UPDATE: GOT IN TOUCH WITH CHILDRENS. THEY UNFORTUNATELY FOR ME ARE NOT TAKING ANYMORE NAMES. THEY HAVE 60 PEOPLE ON THE WAITLIST, SO YES IT IS GOOD NEWS FOR CF RESEARCH...AT LEAST THEY HAVE PEOPLE WHO WANT TO DO THIS FOR THE REST OF US! EITHER WAY IT WILL BE HELPING. I AM SLIGHTLY DISAPPOINTED, BUT GRATEFUL FOR MY FELLOW CFers THAT VOLUNTEERED THE TIME AND EFFORT. THANK YOU TO THOSE INDIVIDUALS. <3
 
M

MCGrad2006

Guest
So Since 770 got approved I have been researching a bit. I had read on here that they are doing a trial for those patients with one copy of deltaF508...which I have...and N1303K as my other one. On CFF.org it lists the sites that are doing the 770/809, but my clinic is not listed. Childrens Boston is listed, but not MGH. Has anyone ever done a trial at another clinic? Did your doctor allow that? How did it work with your records? Did you have be evaluated at the new clinic? I am VERY interested in more information. Please let me know if you know anything. I should mention that...it did say that not all clinics doing the trial are listed, so MGH may be doing it. I have a clinic visit next week and will certainly be bringing this up, but would like to be armed with info! And if anyone specifically knows about Childrens version of the trial feel free to chime in or PM me.

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

UPDATE: GOT IN TOUCH WITH CHILDRENS. THEY UNFORTUNATELY FOR ME ARE NOT TAKING ANYMORE NAMES. THEY HAVE 60 PEOPLE ON THE WAITLIST, SO YES IT IS GOOD NEWS FOR CF RESEARCH...AT LEAST THEY HAVE PEOPLE WHO WANT TO DO THIS FOR THE REST OF US! EITHER WAY IT WILL BE HELPING. I AM SLIGHTLY DISAPPOINTED, BUT GRATEFUL FOR MY FELLOW CFers THAT VOLUNTEERED THE TIME AND EFFORT. THANK YOU TO THOSE INDIVIDUALS. <3
 
M

Mommafirst

Guest
Our CF Research Nurse coordinates bringing in patients from other centers to participate here, and sending our patients to trials elsewhere. Does your clinic have a research nurse? That would be where you should start.
 
M

Mommafirst

Guest
Our CF Research Nurse coordinates bringing in patients from other centers to participate here, and sending our patients to trials elsewhere. Does your clinic have a research nurse? That would be where you should start.
 
M

MCGrad2006

Guest
Good point! I thought about calling my clinic, but the only number I have is either for the reception or the daily nurse line (for RX's or sick calls). I will definitely google a research nurse or call the reception desk! I emailed Childrens already to see if they are taking other ppl, but I feel like I am going over my doctor's head....and I feel kinda bad doing that.<img title="Surprised" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-surprised.gif" alt="Surprised" border="0" />
 
M

MCGrad2006

Guest
Good point! I thought about calling my clinic, but the only number I have is either for the reception or the daily nurse line (for RX's or sick calls). I will definitely google a research nurse or call the reception desk! I emailed Childrens already to see if they are taking other ppl, but I feel like I am going over my doctor's head....and I feel kinda bad doing that.<img title="Surprised" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-surprised.gif" alt="Surprised" border="0" />
 
L

LouLou

New member
Yes I participate out of Philadephia but could have gone to Boston also. I live between both...Phila is a little further but I know Phila and the clinic because I used to live there so chose it. Contact the research coordinator who is handling that specific trial at any center you would be willing to travel to. It doesn't really have anything to do with your center though giving them a head's up that you have contacted X, Y and Z clinics to see if theyhave any openings is a good idea. All data will be collected via the trial center you will just have to communicate changes to your regimen (ie. when you go on abx, etc.). There will be very little data passing between the two centers. It's a lot easier than it sounds and Vertex is far and away the most generous company to "work" for. About the only thing they wouldn't pay for was one time childcare fell through and I had to hire a babysitter so I could go to my appt. They wouldn't reimburse for it. My only worry is that they won't need other patients than there own (which they prefer to try first) since DF508 is quite common. What are the req's of the other mutation?
 
L

LouLou

New member
Yes I participate out of Philadephia but could have gone to Boston also. I live between both...Phila is a little further but I know Phila and the clinic because I used to live there so chose it. Contact the research coordinator who is handling that specific trial at any center you would be willing to travel to. It doesn't really have anything to do with your center though giving them a head's up that you have contacted X, Y and Z clinics to see if theyhave any openings is a good idea. All data will be collected via the trial center you will just have to communicate changes to your regimen (ie. when you go on abx, etc.). There will be very little data passing between the two centers. It's a lot easier than it sounds and Vertex is far and away the most generous company to "work" for. About the only thing they wouldn't pay for was one time childcare fell through and I had to hire a babysitter so I could go to my appt. They wouldn't reimburse for it. My only worry is that they won't need other patients than there own (which they prefer to try first) since DF508 is quite common. What are the req's of the other mutation?
 
M

MCGrad2006

Guest
Lauren...It doesn't say anywhere that there are requirements for the other gene. I know of one other person from that hospital who JUST got started on the trial, so I know they are still recruiting. But again like you (and she) said she didn't think they were recruiting from other places. But the other good thing is, I know the Dr. who is in charge. He used to be at MGH and I was in a trial and worked with him for it...so maybe. I will definitely keep posted!
 
M

MCGrad2006

Guest
Lauren...It doesn't say anywhere that there are requirements for the other gene. I know of one other person from that hospital who JUST got started on the trial, so I know they are still recruiting. But again like you (and she) said she didn't think they were recruiting from other places. But the other good thing is, I know the Dr. who is in charge. He used to be at MGH and I was in a trial and worked with him for it...so maybe. I will definitely keep posted!
 
A

Anomie

New member
MCGrad:
I wanted to ask you how old you were when you acquired your PA, MRSA and aspergillus and how they have affected your health and lung function. I'm just curious because my 4 year old daughter was just diagnosed with your same mutations and she already has aspergillus plus 3 strains of pseudo and now candida. Anyways, get back to me when you have a free sec and good luck getting into the trial. I know they're still recruiting right now so don't delay calling every center in a tri-state region.
 
A

Anomie

New member
MCGrad:
I wanted to ask you how old you were when you acquired your PA, MRSA and aspergillus and how they have affected your health and lung function. I'm just curious because my 4 year old daughter was just diagnosed with your same mutations and she already has aspergillus plus 3 strains of pseudo and now candida. Anyways, get back to me when you have a free sec and good luck getting into the trial. I know they're still recruiting right now so don't delay calling every center in a tri-state region.
 
You must log in or register to reply here.
Top