Have you ever participated in a clinical trial?

[Pinkfish]

I am curious if any of you have participated in a clinical trial, especially at NIH. If so, how was it, did you learn anything and was it worth your time?

[warmwaters]

I have participated in medical trials, though not in Sjogren's related topics.  Back when ultrasounds were relatively new for looking at babies, I was in a study that compared the medical outcomes for those who had ultrasounds versus those who didn't. The mothers were all normal risk pregnancies.  That was a pretty simple study - you either had two ultrasounds, or didn't and had a couple of physicals and questionnaires. BTW - the result was that ultrasounds did not not improve the outcomes for mothers or the child in normal risk pregnancies. But parents demanded them, which is why everyone gets them now.

I also participated in the Sjogren's Registry (sicca.uscf.org), which is data about individuals that researchers can use for their work. That involved a day of various tests, blood draws and a lip biopsy.

I like to do what I can to help science along.  I've never done drug trial, and since I seem to "over respond" to a lot of meds, I'm not sure I'd want to.  Frankly, if my reactions to some of the main stream meds for Sjogren's  where taken into account, we'd have a lot fewer meds available.

Are you thinking of doing one?

[anita]

I have not done a "trial" for a medicine but I have participated in my doctors Sjogren's research many times.  My neuro/rheumy does research on the neuro complications of Sjogren's and I have done everything from blood tests, spinal fluid, questionnaire's, scans, etc to help his research.

My way of giving back.

[SjoDry]

Pinkfish,

I participated in a trial for Sjogren's at the NIH. I was so impressed, I blogged about it. It will give you a feel with regard to the level of professionalism & the process.

You may read about it on my blog: Sjodryandparched
http://sjodry.wordpress.com/2012/02/24/my-trip-to-the-nih/

I even rode the Big Bus there & home for only $13.00 round trip.

SjoDry

[Pinkfish]

Yes, I'm doing one at NIH in June. Always wanted to participate in research. If they can use my body for it, great. I'm sure it will be educational for me too.

http://clinicaltrials.gov/show/NCT01425892

Did you get to keep all your test results, SjoDry? I still haven't received my information packet, so I have so many questions. And were you able to bring cameras in there? I kinda want to document it. I'll have to check out your blog tomorrow, thanks for sharing.

[gemini052377]

Pinkish, do you mind telling which one? I agree with the others, whatever we can do to help advance the dx and treatment of Sjogrens.

I too participated in Sjogren's registry Warmwaters participated in

Take care,
Mary

[Pinkfish]

Check the link I posted, Gemini.   

[cccourt1942]

I got my husband in a stroke prevention study many years ago (decades ago).  He was on the control drug.  Outcome successful.   All men in his family (both sides) dead by early 50s.  He survived triple by pass surgery, another heart attack...and our divorce after 36 years!   Who knows what saved him?  But he never had another TIA...nor has he had a stroke.  He is 82 now.  A modern medical marvel.  He has continued to have health problems but not for that particular malady.  He was in the study 3 years...and followed for 5 after.