Vertex announces DF508 trial!!!

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crickit715

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sue35</b></i>
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<br />How can you find out what hospitals are participating? I was set to do the trial last year but got sick so I would love to try again. Anywhere online I can find out?</end quote>
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<br />..go to cff.org, then find your hospital listed under clinical trials. this trial is already listed on the cff website showing that they are recruiting...but there is only 160 slots nationwide, so they will probably fill up quick. i would call you doc asap! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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zoeg

New member
This sounds AMAZING! Do you have to have two DF508? My daughter has one.

Thanks!
Zoe mom to Kate wCF
 
Z

zoeg

New member
This sounds AMAZING! Do you have to have two DF508? My daughter has one.

Thanks!
Zoe mom to Kate wCF
 
Z

zoeg

New member
This sounds AMAZING! Do you have to have two DF508? My daughter has one.
<br />
<br />Thanks!
<br />Zoe mom to Kate wCF
 
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dasjsmum

New member
this is a very important trial, just wanted to ensure this massage stays on the front page a bit longer so more people can see it.
 
D

dasjsmum

New member
this is a very important trial, just wanted to ensure this massage stays on the front page a bit longer so more people can see it.
 
D

dasjsmum

New member
this is a very important trial, just wanted to ensure this massage stays on the front page a bit longer so more people can see it.
 
L

LouLou

New member
Hi Gang, I've been a bit out of communication for the last 1 or 2 weeks as I'm adjusting to being on V770 now. I'm feeling great! Within a few months my hopes are to be back in the mid 80s FEV1 wise like I was 15 years ago! I've been in the mid 60s since 2001.

Joanne is right. This trial announced is very good stuff. When Vertex started 770 and 809 it was always with the intent to use them together I do believe. Remember that 75% of us have at least one copy of DF508. You only really need to correct one mutation to see drastic results.

The study is only for those with 2 copies of DF508 so that the data is very consistant but have no misunderstanding this drug combo is for all with at least one copy of DF508. And V770 trial was originally going to enroll people with all sorts of missense (or is it nonsense..whatever G551D is) mutations but again for consistancy reasons they went with all patients with at least one copy of G551D.

The best person to contact is the principal investigator and the research coordinator at the center you are interested in participating with. It really has nothing to do with your doctor. Stress how easy you are to work with and how your schedule is quite flexible. The trial is open to those over age 12 I believe. There is going to be a lot of interest and many centers will not be accepting participants from other centers than there own since every center has patients with 2 copies of DF508. For my study which is similiarly sized one center enrolling 4 patients is on the high end so it's very selective - call today!!
 
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LouLou

New member
Hi Gang, I've been a bit out of communication for the last 1 or 2 weeks as I'm adjusting to being on V770 now. I'm feeling great! Within a few months my hopes are to be back in the mid 80s FEV1 wise like I was 15 years ago! I've been in the mid 60s since 2001.

Joanne is right. This trial announced is very good stuff. When Vertex started 770 and 809 it was always with the intent to use them together I do believe. Remember that 75% of us have at least one copy of DF508. You only really need to correct one mutation to see drastic results.

The study is only for those with 2 copies of DF508 so that the data is very consistant but have no misunderstanding this drug combo is for all with at least one copy of DF508. And V770 trial was originally going to enroll people with all sorts of missense (or is it nonsense..whatever G551D is) mutations but again for consistancy reasons they went with all patients with at least one copy of G551D.

The best person to contact is the principal investigator and the research coordinator at the center you are interested in participating with. It really has nothing to do with your doctor. Stress how easy you are to work with and how your schedule is quite flexible. The trial is open to those over age 12 I believe. There is going to be a lot of interest and many centers will not be accepting participants from other centers than there own since every center has patients with 2 copies of DF508. For my study which is similiarly sized one center enrolling 4 patients is on the high end so it's very selective - call today!!
 
L

LouLou

New member
Hi Gang, I've been a bit out of communication for the last 1 or 2 weeks as I'm adjusting to being on V770 now. I'm feeling great! Within a few months my hopes are to be back in the mid 80s FEV1 wise like I was 15 years ago! I've been in the mid 60s since 2001.
<br />
<br />Joanne is right. This trial announced is very good stuff. When Vertex started 770 and 809 it was always with the intent to use them together I do believe. Remember that 75% of us have at least one copy of DF508. You only really need to correct one mutation to see drastic results.
<br />
<br />The study is only for those with 2 copies of DF508 so that the data is very consistant but have no misunderstanding this drug combo is for all with at least one copy of DF508. And V770 trial was originally going to enroll people with all sorts of missense (or is it nonsense..whatever G551D is) mutations but again for consistancy reasons they went with all patients with at least one copy of G551D.
<br />
<br />The best person to contact is the principal investigator and the research coordinator at the center you are interested in participating with. It really has nothing to do with your doctor. Stress how easy you are to work with and how your schedule is quite flexible. The trial is open to those over age 12 I believe. There is going to be a lot of interest and many centers will not be accepting participants from other centers than there own since every center has patients with 2 copies of DF508. For my study which is similiarly sized one center enrolling 4 patients is on the high end so it's very selective - call today!!
 
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