Involved in research studies?

[tammykrumrey]

We do participate in studies. Some are very simple, such as answering some questions at each appt, and taking a little extra blood once a year (which I insist is done at the same time as normal annual blood work is done so they don't have to go through it more than needed). We have done a sibling study in which I also had to give a bit of blood, no big deal. And we are still involved in the EPIC study as well. One daughter is still in the beginning of the study, never have culturing PA, and the other is in the later parts of the study seeing that she has cultured PA. I was very concerned when going on in the study after the PA culture, but my daughters doctor assured me that he would be treating the PA no differently than what was being suggested by the study.
I do have to say that our regular pediatrician didn't seem impressed with the fact that I had her in the study still after culturing PA, but I do trust our CF doctor and feel that they do follow the kids very closely.

 

[NoExcuses]

tammy that is a great study, by the way. by participating you are shedding much needed light on PA treatment for those young ones who begin to culture it.

although the study will have no affect on me, i thank you for your participation and applaud your selflessness (and your kids' selflessness). CFers helping CFers like that will only bring incredible progress in treatment in the coming years <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

tammy that is a great study, by the way. by participating you are shedding much needed light on PA treatment for those young ones who begin to culture it.

although the study will have no affect on me, i thank you for your participation and applaud your selflessness (and your kids' selflessness). CFers helping CFers like that will only bring incredible progress in treatment in the coming years <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

tammy that is a great study, by the way. by participating you are shedding much needed light on PA treatment for those young ones who begin to culture it.

although the study will have no affect on me, i thank you for your participation and applaud your selflessness (and your kids' selflessness). CFers helping CFers like that will only bring incredible progress in treatment in the coming years <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[angelsmom]

My daughter is also in the EPIC study. She was diagnosed at 18 months, cultured PA a month later and we agreed to the study. It is now a little more than a year later and she hasn't cultured PA since.

For us, CF was totally new/unknown at the time they asked us to participate so it was a difficult decision since we knew nothing about CF and had certainly never heard of PA before!! It was only AFTER our decision to enroll her in the study that I began to read more about CF and join online forums to learn more. I am glad we made the choice, in fact, I think we get more contact with our clinic by being in the study . . . our research nurse emails me regularly between clinic appointments to see if there are any changes or anything she needs to document for the study. Usually there is nothing to note, but I get a chance to tell her things that I might not otherwise have a chance to during our clinic visits.

As my daughter gets older (she's almost 3), I plan to talk to her about CF, of course, but I also want to instill in her a sense of responsibility as a CF'er to educate others and to participate in clinical studies. Better treatments and a possible cure will never be found without the studies!

 

[angelsmom]

My daughter is also in the EPIC study. She was diagnosed at 18 months, cultured PA a month later and we agreed to the study. It is now a little more than a year later and she hasn't cultured PA since.

For us, CF was totally new/unknown at the time they asked us to participate so it was a difficult decision since we knew nothing about CF and had certainly never heard of PA before!! It was only AFTER our decision to enroll her in the study that I began to read more about CF and join online forums to learn more. I am glad we made the choice, in fact, I think we get more contact with our clinic by being in the study . . . our research nurse emails me regularly between clinic appointments to see if there are any changes or anything she needs to document for the study. Usually there is nothing to note, but I get a chance to tell her things that I might not otherwise have a chance to during our clinic visits.

As my daughter gets older (she's almost 3), I plan to talk to her about CF, of course, but I also want to instill in her a sense of responsibility as a CF'er to educate others and to participate in clinical studies. Better treatments and a possible cure will never be found without the studies!

 

[angelsmom]

My daughter is also in the EPIC study. She was diagnosed at 18 months, cultured PA a month later and we agreed to the study. It is now a little more than a year later and she hasn't cultured PA since.

For us, CF was totally new/unknown at the time they asked us to participate so it was a difficult decision since we knew nothing about CF and had certainly never heard of PA before!! It was only AFTER our decision to enroll her in the study that I began to read more about CF and join online forums to learn more. I am glad we made the choice, in fact, I think we get more contact with our clinic by being in the study . . . our research nurse emails me regularly between clinic appointments to see if there are any changes or anything she needs to document for the study. Usually there is nothing to note, but I get a chance to tell her things that I might not otherwise have a chance to during our clinic visits.

As my daughter gets older (she's almost 3), I plan to talk to her about CF, of course, but I also want to instill in her a sense of responsibility as a CF'er to educate others and to participate in clinical studies. Better treatments and a possible cure will never be found without the studies!

 

[gsplover]

I have taken part in quite a few clinical trials. You must be very compliant while doing clinical study. Plus you must also meet specific guidelines in order to be part of the study. Most of the time you can do all of your normally prescribed medications.

 

[gsplover]

I have taken part in quite a few clinical trials. You must be very compliant while doing clinical study. Plus you must also meet specific guidelines in order to be part of the study. Most of the time you can do all of your normally prescribed medications.

 

[gsplover]

I have taken part in quite a few clinical trials. You must be very compliant while doing clinical study. Plus you must also meet specific guidelines in order to be part of the study. Most of the time you can do all of your normally prescribed medications.

 

[norcotrent]

Our Cass is participating in the EPIC study for PA as well. FYI - she doesn't have to go to clinic more often. Once in awhile they take a bit more blood to send off to Seattle. We're glad to help and hope that she will feel the same way as she gets older and can make these decisions on her own.

Regards,

Trent

 

[norcotrent]

Our Cass is participating in the EPIC study for PA as well. FYI - she doesn't have to go to clinic more often. Once in awhile they take a bit more blood to send off to Seattle. We're glad to help and hope that she will feel the same way as she gets older and can make these decisions on her own.

Regards,

Trent

 

[norcotrent]

Our Cass is participating in the EPIC study for PA as well. FYI - she doesn't have to go to clinic more often. Once in awhile they take a bit more blood to send off to Seattle. We're glad to help and hope that she will feel the same way as she gets older and can make these decisions on her own.

Regards,

Trent

 

[Diane]

I used to do a lot of studies....Some of them very odd ones . Once they had me sit in water and weigh me, and then i had to walk a brisk pace on a treadmill and be evaluated during and after. Then i did a study which involved drops taken under the tongue.... One was kind of interesting, it was about a way to deliver Pulmozyme much quicker and it was on the news. I have a copy of it here on vhs, and to be honest i dont know if that product ever came out. There were a few more but these were the most notable . Once i got cepacia, i no longer get asked to participate in studies, because all the studies are geared towards treating PA. If they ever had one geared towards cepacia, i'm sure i would participate in that one, but for some reason no-one seems to care much about finding something for cepacia <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[Diane]

I used to do a lot of studies....Some of them very odd ones . Once they had me sit in water and weigh me, and then i had to walk a brisk pace on a treadmill and be evaluated during and after. Then i did a study which involved drops taken under the tongue.... One was kind of interesting, it was about a way to deliver Pulmozyme much quicker and it was on the news. I have a copy of it here on vhs, and to be honest i dont know if that product ever came out. There were a few more but these were the most notable . Once i got cepacia, i no longer get asked to participate in studies, because all the studies are geared towards treating PA. If they ever had one geared towards cepacia, i'm sure i would participate in that one, but for some reason no-one seems to care much about finding something for cepacia <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[Diane]

I used to do a lot of studies....Some of them very odd ones . Once they had me sit in water and weigh me, and then i had to walk a brisk pace on a treadmill and be evaluated during and after. Then i did a study which involved drops taken under the tongue.... One was kind of interesting, it was about a way to deliver Pulmozyme much quicker and it was on the news. I have a copy of it here on vhs, and to be honest i dont know if that product ever came out. There were a few more but these were the most notable . Once i got cepacia, i no longer get asked to participate in studies, because all the studies are geared towards treating PA. If they ever had one geared towards cepacia, i'm sure i would participate in that one, but for some reason no-one seems to care much about finding something for cepacia <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[CFHockeyMom]

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.

 

[CFHockeyMom]

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.

 

[CFHockeyMom]

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.

 

[NoExcuses]

<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">