Clinical Research - Have You Participated?

[TOBEY32]

Can you shed some insight on it? Yes? No? Maybe so?
Maybe the biggest thing - do you get flown (or pay your own way) somewhere? Maybe they sometimes send you the meds and you just take them from home?
You're experience, please!

David

[drz]

I am currently in the longitudinal study for GPA. I just signed an updated permission slip for participation for next ten years. I had the option of quarterly visits or annual visits which require you to do some lab work (blood and urine samples) and a couple interviews. One is with a research assistant who asks questions about GPA symptoms, the other is with a doctor involved in the research study. I pay my own way to get to the Mayo Clinic which is my closest one for this research study plus pay for my hotel room and other expenses. They bill my insurance for lab work and medical services. They have provided a couple $50 checks to help cover meals while there. I view it as a good way to also get a good consultation on my treatment program since they send a report back to my treating physicians and give me a copy of my lab results. The blood work is sent to Philadelphia where this study is headquartered. I also sent in a DNA sample for that study on genetic markers for GPA. After what GPA did to me I am willing to expend considerable effort and money to try help find any thing that might help treat or prevent this nasty disease.

[Red]

I asked my dr at the mayo and he said no compensation there were alot of signage asking for your volunteering i dont want to be a guinea pig !!!

[Sangye]

David, the studies are usually only done at major vasculitis centers. You can find all the studies going on and everything about them (including location, criteria and contact info) at clinicaltrials.gov. Type in "Wegener's granulomatosis" to search for all trials--recruiting, active not recruiting, completed, and terminated. It's a great way to keep up with which studies are going on.

I've participated in the genetic study from Mt Sinai in Toronto. Anyone can do that, as you have blood drawn locally and mail it to them. Your family members collect a simple DNA (mouth swab) sample and mail it in.

[MCC]

I took part in a drugs trial for 18 months when first ill (but I was randomised for the standard drug cyclophosamide not the trial). They just took extra blood samples at the testing place when I was just in for my regular blood test, and I occassionally had to fill in a survey about how I was feeling physically and mentally and talk to the person organising the trial.

I agreed to do it because they said it wouldnt require any extra hospital visits etc