have any of you ever participated in a clinical research study? I am debating whether or not i want to do this study on curcumin( i don't know if you have heard of this study). Anyways I went in today to do their first appointment and screening and it was just awful. I had to do this thing called a npc test ( nasal potential chloride) ever heard of it? It was really painful and they stick these prickly little tubes up your nose for like an hour( It sucked bad). and more ivs and things. I just don't know if it's worth it. They pay a little bit of money, but i wouldn't do it for that. I would only do it if i felt like it was a potential treatment and had good prospects, but i am not to confident in it.So I know i may come off as whining, but would any of you do this? Oh yeah and there was this really creepy nurse too, and i really don't want to see him again. Some advice please?
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should i do this?
- Thread starter tommy
- Start date
I participated in a research study on Pulmozyme when it first came out. They paid me 50 bucks per visit (total of three) to see how effective the drug was. All I had to do was give a little blood and use the Pulmozyme for a month (I believe...I was pretty young when I participated). It was worth it to me. Now I use Pulmozyme every day! I did turn down a recent study I was asked to participate in. I don't remember exactly what the drug was for, but it involved a lot of trips to my doctor's office (which just relocated even FURTHER from my house, where the traffic is horrible). I don't have my own car, so that meant my mom would have to take off work to drive me there. Plus, a lot of blood draws were involved, and my veins aren't so great anymore due to MANY IV's before I had my port placed. Which meant they would have to take the blood from the back of my hand, which HURTS. The money was good, and the cause was worthy, but I just didn't have the time (or stomach) to become a human pin cusion, so I turned it down.
I guess what I'm saying is if the study is uncomfortable for you, and you don't desperately need the money or anything, I wouldn't continue if you aren't completely satisfied with the prospect of the drug itself. And I wouldn't get any more IV's than you have to. So, if it were me, all around I wouldn't do it, but that's just my take. In short---if you don't have faith in the study, get out of it.
I guess what I'm saying is if the study is uncomfortable for you, and you don't desperately need the money or anything, I wouldn't continue if you aren't completely satisfied with the prospect of the drug itself. And I wouldn't get any more IV's than you have to. So, if it were me, all around I wouldn't do it, but that's just my take. In short---if you don't have faith in the study, get out of it.
I participated in a study of CF pregnant women and gestational diabetes. They flew me to Houston and then over the course of a night injected me with gluscose and insulin to watch my blood sugar levels. It was HORRIBLE - maybe partly because I was hormonal -but I couldn't ever sleep, the IV kept failing, the solution they injected me with burned my arm and I had to pee on a darn commode in front of the nurses. I think I got paid 200.00, plus the airfare for me and my step-mom. They wanted me to come back during my second and third trimesters and I refused. It was that bad and no way worth the money (to me anyway), but I think it was a little irresponsible for me to start the project and not finish, as I don't know how my refusal to continue affected the research. I wouldn't sign up to do ti unless you are willing to put up with the hassel!
wanderlost
28 w/CF
wanderlost
28 w/CF
Tommy- my son is 20 also and is now enrolled in his 3rd study. He did a keflex study when he was little and did one on gentomyacin-spelling? when he was 16. He is now enrolled in the PTC124 study where he taking an experimental medicine to see if it will restore at least partially his CFTR protein. He has had many nasal pds and where I know they are a pain he tolerates them well. His last nasal pd did show a change after being on the drug for two weeks- he goes back next week to start on a higher dose- the researchers are very excited. This drug is only for a fairly rare mutation but I hope they will find other things that will help all. My suggestion is to follow your heart and your drs advice. Noone can really know if it is worth it but you- it is such an individual decision. Good luck with what you decide. Susan
For years I participated in different studies. I was always willing if there was a chance it would help CFers overall. The only reason I dont participate in many now is because I dont have the luxury of free time to travel to/from the office which is 2 1/2 hours away. I would most certainly be involved in more if I could do it without needing the visits!
I suppose you should balance the pros and cons of the study. Likely, you will not benefit health-wise from this study, but someone with CF possibly could in the future.
One thing I've found quite tricky is when being compensated for studies, SSI will consider the money as income and it will count against you. I did a 20-day study in the hospital once and was paid about $3000 for it, after which my Medicaid and SSI were cancelled until I appealed and finally won the appeal. Frusterating.
One thing I've found quite tricky is when being compensated for studies, SSI will consider the money as income and it will count against you. I did a 20-day study in the hospital once and was paid about $3000 for it, after which my Medicaid and SSI were cancelled until I appealed and finally won the appeal. Frusterating.
Quite a long time ago a female cf friend of mine, and myself went to the CDC to do a clinical research study, with a stopover at a CF care house in Georgia. My priorities weren't all that right in my 20's, and I viewed the Georgia stop over as just an excuse to go to buckhead and party for a night or two. Partied once in Washington also but I hated D.C. The actual care givers at the CDC were nice, but people up there were generally A-holes, and we had a couple bad experiences. I guess they thought we were A-holes too, cause I never heard back from them for future studies.
Clinical studies, as long as they aren't very invasive to you, can be fun, helpful to the CF community, and some can be slightly profitable because some pay you to participate...Not to mention you can travel some and see parts of the country you might not have before.
Clinical studies, as long as they aren't very invasive to you, can be fun, helpful to the CF community, and some can be slightly profitable because some pay you to participate...Not to mention you can travel some and see parts of the country you might not have before.