cftrsplicing
New member
What do you think about this?
Here are my thoughts.
http://www.cftrsplicing.com/page.php?7
Any hints will be usefull.
Here are my thoughts.
http://www.cftrsplicing.com/page.php?7
Any hints will be usefull.
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Ivacaftor and splicing mutations..
- Thread starter cftrsplicing
- Start date
cftrsplicing
New member
I swear I didn't know before.
http://clinicaltrials.gov/ct2/show/study/NCT01685801
Trial for mild conductance and splicing (residual) started.
http://clinicaltrials.gov/ct2/show/study/NCT01685801
Trial for mild conductance and splicing (residual) started.
Hey Guys!
I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug....
From the researcher doing the trial:
People can call Connie St. Clair directly at 303-270-2517.
It really is open to people from around the country, if they have a fair
amount of flexibility in their schedules- Vertex pays for travel.
I would really encourage any of you with any of these mutations to try and get in the trial. It is a quick trial and then you get the drug....
From the researcher doing the trial:
People can call Connie St. Clair directly at 303-270-2517.
It really is open to people from around the country, if they have a fair
amount of flexibility in their schedules- Vertex pays for travel.
I just replied in the other thread, hadn't seen this one yet!
Drama, I have S945L and I am going to try like heck to get in the study. I have been trying to find a way to get this drug and this could be my ace in the hole. I'm going to hop off here and email the research coordinator at my clinic. She told me she would let me know if Vertex expanded the study to include my mutation but I haven't heard from her. Do you think I should bypass her and call directly to Connie St. Clair? I'll try tomorrow. I don't work and schedule is flexible so could travel a fair amount if needed. Only glitch could be that I have an 10 month old that I'm currently still breastfeeding. Would have to make a quick decision about that. I do know that Kalydeco is a pregnancy Cat B, so maybe I could continue BFing? We'll see!
Thanks everyone for posting!
Autumn
Drama, I have S945L and I am going to try like heck to get in the study. I have been trying to find a way to get this drug and this could be my ace in the hole. I'm going to hop off here and email the research coordinator at my clinic. She told me she would let me know if Vertex expanded the study to include my mutation but I haven't heard from her. Do you think I should bypass her and call directly to Connie St. Clair? I'll try tomorrow. I don't work and schedule is flexible so could travel a fair amount if needed. Only glitch could be that I have an 10 month old that I'm currently still breastfeeding. Would have to make a quick decision about that. I do know that Kalydeco is a pregnancy Cat B, so maybe I could continue BFing? We'll see!
Thanks everyone for posting!
Autumn
It's me again! I was so excited I didn't read through the clinical trial page 100% before posting. Do you guys take that to mean that National Jewish will be the only place doing this study? I'm about an 7 hour drive from Denver, so I still think it would be doable depending on the # and frequency of visits required.
Thanks again!
Thanks again!
It's me again! I was so excited I didn't read through the clinical trial page 100% before posting. Do you guys take that to mean that National Jewish will be the only place doing this study? I'm about an 7 hour drive from Denver, so I still think it would be doable depending on the # and frequency of visits required.
Thanks again!
They are the only place doing the trial. Call Connie!