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Clinical Trials

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anonymous

New member
Just for discussions sake, I was wondering what, if any clinical trials everyone would be willing to participate in, if given the chance? I would consider trials for curcumin, possibly gene therapy, and maybe glutathione. How about everyone else? Also, if anyone has participated in clinical trials, what was your experience? Would you do it again? Thanks.
 
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anonymous

New member
Since we're on the subject and it's all hypothetical anyway, what about your children?? What trials would you be willing to consider for your child, assuming of course, they were sactioned by the CFF & your doctors approved?
 
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anonymous

New member
I would have my child in the liquid enzyme trial!!!!!!! and his drs would probley drive us there personally just to get those enzymes in him, lol he is going to be 3 in a few weeks, he was diagnosed at 7 months and weve been trying to get him to take them since then and he just wont do it.. they tried to get him in the trial but you had to be over the age of 7 so instead were going to a behavioral specialist next month that specializes in kids with health problems.. so now its just a big wait and see game...Melissa 24, mom to dylan 5 no cf and caleb almost 3 wcf... living in the beautiful state of Maine.....
 
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anonymous

New member
Hello there,There are a few trials I may consider, definately the curcumin trial, and liquid enzymes.I wish I could say gene therapy but my son is only 14 months and the idea of it makes me a bit nervous.He is already participating in a research on Tobi under 6, which has proved to be absolutely valuable as we have already had pseudomonas at such a early stage, but the hearing issue did frighten me a little but it has proved to be very valuable as I know it will preserve his lungs for a longer period.I would also consider a clinical trial for the drug ins37217 which has been in the limelight a bit lately as well, sounds like they are not far off human trial stage.Rebekah Mother to matt 14mths w/cf
 
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anonymous

New member
Rebekah You mentioned that you thought ins37217 wasn't too far from human trials...I think it is in stage three right now, which I am pretty sure means that it is being tested to be a sure thing.take a look at the clinical trials as of february:http://www.cff.org/images/customcontent/Pipeline_Feb_2004.pdfJake
 
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anonymous

New member
Here is another link suggesting that Inspire Pharmaceuticals is well on its way with INS37217!http://www.cff.org/images/customcontent/ACFBA68.pdfI'm excited! How about you?Jake
 
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anonymous

New member
Ins37217 is a drug which has found a alternate chloride channel to function, therefore fixing the root cause of CF.I have read a lot about it and it sounds really good.I am feeling really positive about this.Thanks Jake I went and read some more about it and you are right they are really far down the track so I will watch with great interest.RebekahMother to Matt 14mths w/CF
 
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