Involved in research studies?

M

MCGrad2006

Guest
Hii...

I am participating in a study right now on a new drug that will hopefully be approved this summer and available for distribution shortly thereafter. Its called aztreonam lysinate with the new eflow neb. Its really cool. I have enjoyed so much being a part of the process and learning the more detailed processes. There were certain drugs I couldnt be at during certain parts of the study, but I hadnt been on those drugs anyway, so it didnt affect me, which made it even easier for me to be in the study.

Ive written a lot about this study in different threads on the board as well as my blogs, if you wish to read more about it. The drug has done wonders for me, and I am so glad that I have the chance to make lives better by being a part of this. My cough pretty much goes away when I am on the drug and like three days later starts up again...since the drug is kind of like tobi (month on, month off type deal). Its wonderfull...<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MCGrad2006

Guest
Hii...

I am participating in a study right now on a new drug that will hopefully be approved this summer and available for distribution shortly thereafter. Its called aztreonam lysinate with the new eflow neb. Its really cool. I have enjoyed so much being a part of the process and learning the more detailed processes. There were certain drugs I couldnt be at during certain parts of the study, but I hadnt been on those drugs anyway, so it didnt affect me, which made it even easier for me to be in the study.

Ive written a lot about this study in different threads on the board as well as my blogs, if you wish to read more about it. The drug has done wonders for me, and I am so glad that I have the chance to make lives better by being a part of this. My cough pretty much goes away when I am on the drug and like three days later starts up again...since the drug is kind of like tobi (month on, month off type deal). Its wonderfull...<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

MCGrad2006

Guest
Hii...

I am participating in a study right now on a new drug that will hopefully be approved this summer and available for distribution shortly thereafter. Its called aztreonam lysinate with the new eflow neb. Its really cool. I have enjoyed so much being a part of the process and learning the more detailed processes. There were certain drugs I couldnt be at during certain parts of the study, but I hadnt been on those drugs anyway, so it didnt affect me, which made it even easier for me to be in the study.

Ive written a lot about this study in different threads on the board as well as my blogs, if you wish to read more about it. The drug has done wonders for me, and I am so glad that I have the chance to make lives better by being a part of this. My cough pretty much goes away when I am on the drug and like three days later starts up again...since the drug is kind of like tobi (month on, month off type deal). Its wonderfull...<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>izemmom</b></i>

I just wanted to thank Claudette...as a mom to a child under six who has used both TOBI and Pulmozyme. I'm sure that Sean's participation in the studies helped pave the way</end quote></div>



I totally agree - THANK YOU Claudette.

I've also learned from this thread that Katy could be old enough for some studies. We have our CF appointment tomorrow so I'll ask the doc what he's got going on.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>izemmom</b></i>

I just wanted to thank Claudette...as a mom to a child under six who has used both TOBI and Pulmozyme. I'm sure that Sean's participation in the studies helped pave the way</end quote></div>



I totally agree - THANK YOU Claudette.

I've also learned from this thread that Katy could be old enough for some studies. We have our CF appointment tomorrow so I'll ask the doc what he's got going on.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>izemmom</b></i>

I just wanted to thank Claudette...as a mom to a child under six who has used both TOBI and Pulmozyme. I'm sure that Sean's participation in the studies helped pave the way</end quote></div>



I totally agree - THANK YOU Claudette.

I've also learned from this thread that Katy could be old enough for some studies. We have our CF appointment tomorrow so I'll ask the doc what he's got going on.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
P

princessjdc

New member
I have never been involved in research studies. My mom was asked to put me in one when I was little, but my mom said no cause she wanted me to grow up healthy and not sick. She assumed that by me doing these researches that I would have a bad reaction to it or it would cause some harm to me and she didnt want that. I think that doing research is a good thing to get involved in but I never have since being an adult. I have never been asked to either since I was an adult. I dont know exactly what all goes on but what I do know it sounds like a lot of work. Since Im not that close to my doc and its a pain driving to my doc I doubt Ill ever be in any research studies, if I move closer to where my doc is located I maybe a possibility until then who knows.
 
P

princessjdc

New member
I have never been involved in research studies. My mom was asked to put me in one when I was little, but my mom said no cause she wanted me to grow up healthy and not sick. She assumed that by me doing these researches that I would have a bad reaction to it or it would cause some harm to me and she didnt want that. I think that doing research is a good thing to get involved in but I never have since being an adult. I have never been asked to either since I was an adult. I dont know exactly what all goes on but what I do know it sounds like a lot of work. Since Im not that close to my doc and its a pain driving to my doc I doubt Ill ever be in any research studies, if I move closer to where my doc is located I maybe a possibility until then who knows.
 
P

princessjdc

New member
I have never been involved in research studies. My mom was asked to put me in one when I was little, but my mom said no cause she wanted me to grow up healthy and not sick. She assumed that by me doing these researches that I would have a bad reaction to it or it would cause some harm to me and she didnt want that. I think that doing research is a good thing to get involved in but I never have since being an adult. I have never been asked to either since I was an adult. I dont know exactly what all goes on but what I do know it sounds like a lot of work. Since Im not that close to my doc and its a pain driving to my doc I doubt Ill ever be in any research studies, if I move closer to where my doc is located I maybe a possibility until then who knows.
 
T

treehugger

New member
I am a lab rat for a trial of defusonal. It's a nebulized drug that they hope will work better than hypertonic saline and on the fast track for FDA approval. My clinic is having a hard time finding volunteers since they need people with no current lung excaberations and FEVs above 75%. Since the drug is administered for 15 min 3x/day its an awful lot to add on top of extensive treatment regimes for children with school and other folks with multiple treatments a day. I can shut more door at work and warn my office mates that the vibrating noise they hear is not me having a "good time" by myself. Hopefully this drug will end up being a helpful one. And they do pay $35-$110/visit depending on the length of the visit and they give you gas cards to cover your travel. There are no fees for the labs/check ups.

Ta Ta!
 
T

treehugger

New member
I am a lab rat for a trial of defusonal. It's a nebulized drug that they hope will work better than hypertonic saline and on the fast track for FDA approval. My clinic is having a hard time finding volunteers since they need people with no current lung excaberations and FEVs above 75%. Since the drug is administered for 15 min 3x/day its an awful lot to add on top of extensive treatment regimes for children with school and other folks with multiple treatments a day. I can shut more door at work and warn my office mates that the vibrating noise they hear is not me having a "good time" by myself. Hopefully this drug will end up being a helpful one. And they do pay $35-$110/visit depending on the length of the visit and they give you gas cards to cover your travel. There are no fees for the labs/check ups.

Ta Ta!
 
T

treehugger

New member
I am a lab rat for a trial of defusonal. It's a nebulized drug that they hope will work better than hypertonic saline and on the fast track for FDA approval. My clinic is having a hard time finding volunteers since they need people with no current lung excaberations and FEVs above 75%. Since the drug is administered for 15 min 3x/day its an awful lot to add on top of extensive treatment regimes for children with school and other folks with multiple treatments a day. I can shut more door at work and warn my office mates that the vibrating noise they hear is not me having a "good time" by myself. Hopefully this drug will end up being a helpful one. And they do pay $35-$110/visit depending on the length of the visit and they give you gas cards to cover your travel. There are no fees for the labs/check ups.

Ta Ta!
 
T

treehugger

New member
I am in the intial double blind stage where you don't know if you are getting the drug or placebo (saline). After about 12 weeks or so I get the drug. So it's hard to tell since it is so early. I will keep everyone posted but won't be able to give an honest appraisal until I am sure I am getting the drug.
 
T

treehugger

New member
I am in the intial double blind stage where you don't know if you are getting the drug or placebo (saline). After about 12 weeks or so I get the drug. So it's hard to tell since it is so early. I will keep everyone posted but won't be able to give an honest appraisal until I am sure I am getting the drug.
 
T

treehugger

New member
I am in the intial double blind stage where you don't know if you are getting the drug or placebo (saline). After about 12 weeks or so I get the drug. So it's hard to tell since it is so early. I will keep everyone posted but won't be able to give an honest appraisal until I am sure I am getting the drug.
 
N

NoExcuses

New member
Treehugger thank you for your participation in the clinical trial!

I am extremely grateful to you for helping to bring this med to the market. Thank you thank you thank you!
 
N

NoExcuses

New member
Treehugger thank you for your participation in the clinical trial!

I am extremely grateful to you for helping to bring this med to the market. Thank you thank you thank you!
 
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