I was surprised by some of what I learned yesterday about these trials.
For instance: when I think of a clinical trial I immediately think, oh no I might get a placebo. I don't want to be playing around. As a chronic pain patient I also find I think of those docs who have not been able to give us a diagnosis so just say "It's in your head." What if I am on the placebo but I feel there is a benefit? Then is it psychological? (even though the diagnosis has been verified and reverified by tests, definitive signs and symptoms, and for me, surgery. Too many docs have made me paranoid. (Even a family that thinks 5 neurosurgeons operated on my brain just for the heck of it.) And what if I am on a med that is helping? I surely will not stop taking that drug.
Joan assured me that many tests are what is called 'add-on". It is easier for me to use her example.
If you have asthma, you would stay on your drug and get an 'add-on' a drug that is being tested to see if it will assist the drug you are taking, for instance, using an inhaler every 3 days instead of everyday when you are on the 'add-on' test medication. The other person gets the placebo so, regardless, is still benefitting from their normal regimen.
Other studies may have one group on a standard regimen while the study group takes the experimental drug.
This is a click for a full explanation of each phase of testing: http://www.centerwatch.com/clinical-trials/overview.aspx
And a click for Volunteering for clinical trial, what to expect, what to ask, how to get into one, etc.: http://www.centerwatch.com/clinical-trials/volunteering.aspx
For us for instance Astrazenica is currently testing a drug to see if it helps with the side effect of constipation from taking narcotics.
http://www.astrazenecaclinicaltrials.com/diseases-and-conditions/diseaseandconditions/?fieldValues%5Ball%5D=&fieldValues%5Breportavailable%5D=&fieldValues%5Brecruitingstatus%5D=&fieldValues%5Bdiseases%5D=AZN104170&fieldValues%5Bproducts%5D=&fieldValues%5Bphase%5D=
And here is click for list of clinical trials: http://www.centerwatch.com/clinical-trials/listings/
What do you think? Would you do a clinical trial? Why, why not? Would you want to be paid? What other information would be important to you?
I truly hope you will be open to answering these questions. It gives the testers more information on how they can help us and we them.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
Great point on misunderstandings about placebos. We're working on building a patient friendly search engine for clinical trials at TrialReach (http://www.trialreach.com)- would love to hear any feedback you might have on what we're doing.
ReplyDeleteOne other site which has great info about the general clinical trials process is the Cancer Research UK site (http://cancerhelp.cancerresearchuk.org/trials/)
Thanks and I will let my women in pain awareness group know about the site(s).
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