Involved in research studies?

[westonsmom]

My husband and I went to a CFF appreciation dinner the other night in which the president of the foundation spoke. He mentioned that they are in need of CF'ers to do research studies so that they can test these new medications. I was wondering if anyone has ever been involved and what it all intales. He mentioned that a lot of people don't want there child to be involved I am assuming that this is because they would have to be off the other meds. I don't want Weston's health to be compromised but if it means finding a drug that will cure his symptoms I am truely thinking about it. Anyone have experience?

 

[westonsmom]

My husband and I went to a CFF appreciation dinner the other night in which the president of the foundation spoke. He mentioned that they are in need of CF'ers to do research studies so that they can test these new medications. I was wondering if anyone has ever been involved and what it all intales. He mentioned that a lot of people don't want there child to be involved I am assuming that this is because they would have to be off the other meds. I don't want Weston's health to be compromised but if it means finding a drug that will cure his symptoms I am truely thinking about it. Anyone have experience?

 

[westonsmom]

My husband and I went to a CFF appreciation dinner the other night in which the president of the foundation spoke. He mentioned that they are in need of CF'ers to do research studies so that they can test these new medications. I was wondering if anyone has ever been involved and what it all intales. He mentioned that a lot of people don't want there child to be involved I am assuming that this is because they would have to be off the other meds. I don't want Weston's health to be compromised but if it means finding a drug that will cure his symptoms I am truely thinking about it. Anyone have experience?

 

[JazzysMom]

We have a few people that have been in studies. When I was younger I was. As I got older & had more responsibilities I stopped doing them. It got to be too hard to get down to clinic as often as needed. Maybe if I was closer I would have continued.

 

[JazzysMom]

We have a few people that have been in studies. When I was younger I was. As I got older & had more responsibilities I stopped doing them. It got to be too hard to get down to clinic as often as needed. Maybe if I was closer I would have continued.

 

[JazzysMom]

We have a few people that have been in studies. When I was younger I was. As I got older & had more responsibilities I stopped doing them. It got to be too hard to get down to clinic as often as needed. Maybe if I was closer I would have continued.

 

[ktsmom]

I have the same reservations about Katy being in studies. Right now she is too young, as far as I can tell. If I were the CF patient, I think I would go for it (if I could, you know, considering work and other obligations).

I know that our CF doc participates in many, many studies - I'm really proud of him and his dedication to studying this disease. I think when Katy gets old enough we will take a real hard look at enrolling her in some of the studies. If we don't do it, who will?

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

 

[ktsmom]

I have the same reservations about Katy being in studies. Right now she is too young, as far as I can tell. If I were the CF patient, I think I would go for it (if I could, you know, considering work and other obligations).

I know that our CF doc participates in many, many studies - I'm really proud of him and his dedication to studying this disease. I think when Katy gets old enough we will take a real hard look at enrolling her in some of the studies. If we don't do it, who will?

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

 

[ktsmom]

I have the same reservations about Katy being in studies. Right now she is too young, as far as I can tell. If I were the CF patient, I think I would go for it (if I could, you know, considering work and other obligations).

I know that our CF doc participates in many, many studies - I'm really proud of him and his dedication to studying this disease. I think when Katy gets old enough we will take a real hard look at enrolling her in some of the studies. If we don't do it, who will?

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

 

[NoExcuses]

This is why I have a cow when people on this board state that they're going to participate in clinical trials.

I think it is a true selfless act and a great gift to the patient and the CF community.

And no, you don't have to go off all of your other meds. That's not true at all. I would participate in more studies but my center simply hasn't had any in many years.

I am grateful for those who do participate - otherwise we would never have new meds for CF. Bottomline.

 

[NoExcuses]

This is why I have a cow when people on this board state that they're going to participate in clinical trials.

I think it is a true selfless act and a great gift to the patient and the CF community.

And no, you don't have to go off all of your other meds. That's not true at all. I would participate in more studies but my center simply hasn't had any in many years.

I am grateful for those who do participate - otherwise we would never have new meds for CF. Bottomline.

 

[NoExcuses]

This is why I have a cow when people on this board state that they're going to participate in clinical trials.

I think it is a true selfless act and a great gift to the patient and the CF community.

And no, you don't have to go off all of your other meds. That's not true at all. I would participate in more studies but my center simply hasn't had any in many years.

I am grateful for those who do participate - otherwise we would never have new meds for CF. Bottomline.

 

[CowTown]

Hi Jen,

I was in a few studies years ago and from what I remember you are always monitored, weekly or monthly, to make sure you are not going through any side effects. I think if you had any adverse effects, they would of course take you off whatever the med was immediately. I said yes to the studies that sounded good to me (for example the TOBI study), and no to the ones I didn't like the sound of (for example the long term advil study).

Good luck, and I think it's a nobel thing to do.

 

[CowTown]

Hi Jen,

I was in a few studies years ago and from what I remember you are always monitored, weekly or monthly, to make sure you are not going through any side effects. I think if you had any adverse effects, they would of course take you off whatever the med was immediately. I said yes to the studies that sounded good to me (for example the TOBI study), and no to the ones I didn't like the sound of (for example the long term advil study).

Good luck, and I think it's a nobel thing to do.

 

[CowTown]

Hi Jen,

I was in a few studies years ago and from what I remember you are always monitored, weekly or monthly, to make sure you are not going through any side effects. I think if you had any adverse effects, they would of course take you off whatever the med was immediately. I said yes to the studies that sounded good to me (for example the TOBI study), and no to the ones I didn't like the sound of (for example the long term advil study).

Good luck, and I think it's a nobel thing to do.

 

[mneville]

My son Aidan has been in one study already (DHA formula study) and is currently in his second, the EPIC study for the best way to treat PA.

Megn

 

[mneville]

My son Aidan has been in one study already (DHA formula study) and is currently in his second, the EPIC study for the best way to treat PA.

Megn

 

[mneville]

My son Aidan has been in one study already (DHA formula study) and is currently in his second, the EPIC study for the best way to treat PA.

Megn

 

[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.

 

[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.