Involved in research studies?

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NoExcuses

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

We pimp Sean out for as many studies as he's invited to participate in..</end quote></div>


Thank you for making my day. That phraise is just hysterical <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

We pimp Sean out for as many studies as he's invited to participate in..</end quote></div>


Thank you for making my day. That phraise is just hysterical <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sarabeth87

New member
I wish I had a chance to particpate in clincial trials, but my CF care center doesn't really do any, in fact I've never heard of them doing any.
 
S

sarabeth87

New member
I wish I had a chance to particpate in clincial trials, but my CF care center doesn't really do any, in fact I've never heard of them doing any.
 
S

sarabeth87

New member
I wish I had a chance to particpate in clincial trials, but my CF care center doesn't really do any, in fact I've never heard of them doing any.
 
R

Ratatosk

Administrator
Staff member
Just took a peek at the CFF site at all the studies going on -- interesting stuff. World wide study using powdered tobi -- Mexico, Sao Paulo, Europe, US...

And there was a phase II study regarding azithromycin and cepacia patients.
 
R

Ratatosk

Administrator
Staff member
Just took a peek at the CFF site at all the studies going on -- interesting stuff. World wide study using powdered tobi -- Mexico, Sao Paulo, Europe, US...

And there was a phase II study regarding azithromycin and cepacia patients.
 
R

Ratatosk

Administrator
Staff member
Just took a peek at the CFF site at all the studies going on -- interesting stuff. World wide study using powdered tobi -- Mexico, Sao Paulo, Europe, US...

And there was a phase II study regarding azithromycin and cepacia patients.
 
S

sue35

New member
I love the "pimp out" phrase especially because that was totally me when I was younger. I was in so many studies I didn't even know which one was which. I think it was a great thing, I was lucky to have a center that had so many studies. I wish I was in more now but I can't get to my center as much to be able to do them. I am also not offered them anymore, which is sad.
 
S

sue35

New member
I love the "pimp out" phrase especially because that was totally me when I was younger. I was in so many studies I didn't even know which one was which. I think it was a great thing, I was lucky to have a center that had so many studies. I wish I was in more now but I can't get to my center as much to be able to do them. I am also not offered them anymore, which is sad.
 
S

sue35

New member
I love the "pimp out" phrase especially because that was totally me when I was younger. I was in so many studies I didn't even know which one was which. I think it was a great thing, I was lucky to have a center that had so many studies. I wish I was in more now but I can't get to my center as much to be able to do them. I am also not offered them anymore, which is sad.
 
T

thefrogprincess

New member
I have done maybe 5 or 6 studies and I'm in one right now. All of them are different. The more time you have to spend on it the more you get paid too. Your child won't always have to stop his or her current meds. In fact I've only ever been approached about one study for a new kind of enzyme that would have involved me going off enzymes all together for about a week.

The most involved one I was in involved a med they were trying to see if they could improve the salt delivery to cells. I had to go in one day per week for 4 weeks. The first visit was med free to get my base line. At every visit they took a prenancy test and some other basic blood work, did a PFT, and vitals. Then they did the nasal differential test. If you don't know what that is; they put a little tube just on the inside of your nose, and a needle just under your skin on your arm. They hook you up to a machine that reads the electrical charge in your body. They run several different fluid through the tube in your nose (it drips out into a basin) and the different fluids give different electrical readings. This test is also used to diagnose CF sometimes.

Studies don't always involve meds though. The one I'm in right now doesn't. They are trying to get a baseline for what is "healthy" with CF. I do a 7 day journal twice when I'm well and once when I'm sick. I also wear a step counter during the journal periods to give an idea of my activity level and how that relates to how I'm feeling. The questions on the journal are stuff like "How much did you cough?" "How much mucus did you cough up?" Etc.

While med studies are very useful of course, so are non-med ones. I won't do any antibiotic studies at this point, just because I am not resistant to anything yet.

I never did studies when I was a kid because we lived 3 hours from our CF center. But if it had been possible I think my parents probably would have let us participate, if we had wanted to.
 
T

thefrogprincess

New member
I have done maybe 5 or 6 studies and I'm in one right now. All of them are different. The more time you have to spend on it the more you get paid too. Your child won't always have to stop his or her current meds. In fact I've only ever been approached about one study for a new kind of enzyme that would have involved me going off enzymes all together for about a week.

The most involved one I was in involved a med they were trying to see if they could improve the salt delivery to cells. I had to go in one day per week for 4 weeks. The first visit was med free to get my base line. At every visit they took a prenancy test and some other basic blood work, did a PFT, and vitals. Then they did the nasal differential test. If you don't know what that is; they put a little tube just on the inside of your nose, and a needle just under your skin on your arm. They hook you up to a machine that reads the electrical charge in your body. They run several different fluid through the tube in your nose (it drips out into a basin) and the different fluids give different electrical readings. This test is also used to diagnose CF sometimes.

Studies don't always involve meds though. The one I'm in right now doesn't. They are trying to get a baseline for what is "healthy" with CF. I do a 7 day journal twice when I'm well and once when I'm sick. I also wear a step counter during the journal periods to give an idea of my activity level and how that relates to how I'm feeling. The questions on the journal are stuff like "How much did you cough?" "How much mucus did you cough up?" Etc.

While med studies are very useful of course, so are non-med ones. I won't do any antibiotic studies at this point, just because I am not resistant to anything yet.

I never did studies when I was a kid because we lived 3 hours from our CF center. But if it had been possible I think my parents probably would have let us participate, if we had wanted to.
 
T

thefrogprincess

New member
I have done maybe 5 or 6 studies and I'm in one right now. All of them are different. The more time you have to spend on it the more you get paid too. Your child won't always have to stop his or her current meds. In fact I've only ever been approached about one study for a new kind of enzyme that would have involved me going off enzymes all together for about a week.

The most involved one I was in involved a med they were trying to see if they could improve the salt delivery to cells. I had to go in one day per week for 4 weeks. The first visit was med free to get my base line. At every visit they took a prenancy test and some other basic blood work, did a PFT, and vitals. Then they did the nasal differential test. If you don't know what that is; they put a little tube just on the inside of your nose, and a needle just under your skin on your arm. They hook you up to a machine that reads the electrical charge in your body. They run several different fluid through the tube in your nose (it drips out into a basin) and the different fluids give different electrical readings. This test is also used to diagnose CF sometimes.

Studies don't always involve meds though. The one I'm in right now doesn't. They are trying to get a baseline for what is "healthy" with CF. I do a 7 day journal twice when I'm well and once when I'm sick. I also wear a step counter during the journal periods to give an idea of my activity level and how that relates to how I'm feeling. The questions on the journal are stuff like "How much did you cough?" "How much mucus did you cough up?" Etc.

While med studies are very useful of course, so are non-med ones. I won't do any antibiotic studies at this point, just because I am not resistant to anything yet.

I never did studies when I was a kid because we lived 3 hours from our CF center. But if it had been possible I think my parents probably would have let us participate, if we had wanted to.
 
I

izemmom

New member
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 for Emily to use them. She had not cultured PA since our 4th round of Tobi was completed. I don't notice a huge effect from the Pulmo (except that her nose runs after we do it) but I figure it can't be hurting her...

I wish our clinic did trials (or, let us know about them if they are doing them!). We'd do the ones we could. Except for maybe the pooping in the tube ones that get talked about from time to time...I deal with enough poop as it is LOL!!!

Good thread! Glad to see that so many are willing to do the studies!
 
I

izemmom

New member
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 for Emily to use them. She had not cultured PA since our 4th round of Tobi was completed. I don't notice a huge effect from the Pulmo (except that her nose runs after we do it) but I figure it can't be hurting her...

I wish our clinic did trials (or, let us know about them if they are doing them!). We'd do the ones we could. Except for maybe the pooping in the tube ones that get talked about from time to time...I deal with enough poop as it is LOL!!!

Good thread! Glad to see that so many are willing to do the studies!
 
I

izemmom

New member
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 for Emily to use them. She had not cultured PA since our 4th round of Tobi was completed. I don't notice a huge effect from the Pulmo (except that her nose runs after we do it) but I figure it can't be hurting her...

I wish our clinic did trials (or, let us know about them if they are doing them!). We'd do the ones we could. Except for maybe the pooping in the tube ones that get talked about from time to time...I deal with enough poop as it is LOL!!!

Good thread! Glad to see that so many are willing to do the studies!
 
H

hopefullmom

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

We pimp Sean out for as many studies as he's invited to participate in. His first was when he was two. The study was to investigate the benefits of Pulmozyme on kids under six. Back then Pulmozyme was only intended for kids over 6. Because all the kids in the study were considered too young for PFT's they evaluated their lungs by high res CT which was also considered a new technique in the CF world at the time.



We did a similar study for the use of Tobi on kids under six.



Sean also participated in a growth hormone study to evaluate the lung function benefits on small CF kids.



We've done some that are just "information" gathering where we periodically get a call from the clinic with questions.



The latest one Sean has been invited to participate in is for a new enzyme.



Every study is different as far as what is involved. The Pulmozyme study and the Tobi study were relatively simple and straight forward. The growth hormone study was a bit more involved (increased Dr. visits, blood draws, etc.) and the enzyme study is quite involved (2 four day hospital stays, fecal analysis, special diet, etc.)



Sean is now the one that ultimately makes the decision if he wants to participate but honestly we do encourage him. It's our responsibility to help the CF community. If people don't volunteer then new drugs/therapies/information can't be brought to market. I know a lot of people that think drug trials are only for adults but if only adults participate then therapies will only be for adults. You can't just sit by and hope someone else will step up.



A couple of notes....



Sean's health has never ever been comprimised due to a study. In fact, with the Pulmozyme and Tobi studies we only saw an improvement. Unfortunately in the growth hormone study, he was in the control group and was not on the drug. I can tell you that Sean was VERY disappointed about that!



Only volunteer for a study if you're compliant with your CF regimine and can stick to the protocol. Like I said, some are quite involved. One of the reasons Sean is regularly asked to pariticpate is because he's very compliant and is willing to do whatever is outlined in the study.</end quote></div>

Hi I noticed your son did the growht hormones and I am in the process of trying to figure out if that is right for my daughter . Could you tell it helped? Mom to Maci
 
H

hopefullmom

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

We pimp Sean out for as many studies as he's invited to participate in. His first was when he was two. The study was to investigate the benefits of Pulmozyme on kids under six. Back then Pulmozyme was only intended for kids over 6. Because all the kids in the study were considered too young for PFT's they evaluated their lungs by high res CT which was also considered a new technique in the CF world at the time.



We did a similar study for the use of Tobi on kids under six.



Sean also participated in a growth hormone study to evaluate the lung function benefits on small CF kids.



We've done some that are just "information" gathering where we periodically get a call from the clinic with questions.



The latest one Sean has been invited to participate in is for a new enzyme.



Every study is different as far as what is involved. The Pulmozyme study and the Tobi study were relatively simple and straight forward. The growth hormone study was a bit more involved (increased Dr. visits, blood draws, etc.) and the enzyme study is quite involved (2 four day hospital stays, fecal analysis, special diet, etc.)



Sean is now the one that ultimately makes the decision if he wants to participate but honestly we do encourage him. It's our responsibility to help the CF community. If people don't volunteer then new drugs/therapies/information can't be brought to market. I know a lot of people that think drug trials are only for adults but if only adults participate then therapies will only be for adults. You can't just sit by and hope someone else will step up.



A couple of notes....



Sean's health has never ever been comprimised due to a study. In fact, with the Pulmozyme and Tobi studies we only saw an improvement. Unfortunately in the growth hormone study, he was in the control group and was not on the drug. I can tell you that Sean was VERY disappointed about that!



Only volunteer for a study if you're compliant with your CF regimine and can stick to the protocol. Like I said, some are quite involved. One of the reasons Sean is regularly asked to pariticpate is because he's very compliant and is willing to do whatever is outlined in the study.</end quote></div>

Hi I noticed your son did the growht hormones and I am in the process of trying to figure out if that is right for my daughter . Could you tell it helped? Mom to Maci
 
H

hopefullmom

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

We pimp Sean out for as many studies as he's invited to participate in. His first was when he was two. The study was to investigate the benefits of Pulmozyme on kids under six. Back then Pulmozyme was only intended for kids over 6. Because all the kids in the study were considered too young for PFT's they evaluated their lungs by high res CT which was also considered a new technique in the CF world at the time.



We did a similar study for the use of Tobi on kids under six.



Sean also participated in a growth hormone study to evaluate the lung function benefits on small CF kids.



We've done some that are just "information" gathering where we periodically get a call from the clinic with questions.



The latest one Sean has been invited to participate in is for a new enzyme.



Every study is different as far as what is involved. The Pulmozyme study and the Tobi study were relatively simple and straight forward. The growth hormone study was a bit more involved (increased Dr. visits, blood draws, etc.) and the enzyme study is quite involved (2 four day hospital stays, fecal analysis, special diet, etc.)



Sean is now the one that ultimately makes the decision if he wants to participate but honestly we do encourage him. It's our responsibility to help the CF community. If people don't volunteer then new drugs/therapies/information can't be brought to market. I know a lot of people that think drug trials are only for adults but if only adults participate then therapies will only be for adults. You can't just sit by and hope someone else will step up.



A couple of notes....



Sean's health has never ever been comprimised due to a study. In fact, with the Pulmozyme and Tobi studies we only saw an improvement. Unfortunately in the growth hormone study, he was in the control group and was not on the drug. I can tell you that Sean was VERY disappointed about that!



Only volunteer for a study if you're compliant with your CF regimine and can stick to the protocol. Like I said, some are quite involved. One of the reasons Sean is regularly asked to pariticpate is because he's very compliant and is willing to do whatever is outlined in the study.</end quote></div>

Hi I noticed your son did the growht hormones and I am in the process of trying to figure out if that is right for my daughter . Could you tell it helped? Mom to Maci
 
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