question about clinical trials/reseach studies--(testing, not medications)

[confuzzled]

i'd like to know, if any of you have participated in any that had (neuropsychologist-like) testing and/or imaging studies as a component if you actually got your individual results and if you thought it was helpful.

did you get a report, or was it verbal or do you have no idea what the results are?

i'm seriously considering doing one with dd2--it almost sounds like the opportunity of a lifetime. i'm not going to lie, its for selfish reasons--not for the greater good, although we'd be happy to help with that too, lol. but i might think twice if its just blind--i'm pretty overwhelmed in real life and cant really take on another thing if there isnt any actual benefit to us....

so i'd really like to know the good, the bad and the ugly.

 

[JJJ]

We've done a few. We have always gotten at least 'informal' individual results in not a written report. I know some don't so you would have to ask before committing.

 

[Marguerite]

As understand it, the rules are supposed to be the same for any good medical research around the world. However, there are always unscrupulous researchers who break the rules.

Research subjects should not pay for treatment that is part of a research project. Any results should be available to the subject, once the researchers have the results. However in the event of a blinded study, you might not get the results until the entire study has been completed for all subjects. This can take years. But a blinded study will say so. For example, the oxytocin study that difficult child 3 was part of has had the code broken eventually for the part difficult child 3 was in, but it was done in such a way that we know difficult child 3's individual result but the researchers do not. The study in total is not yet complete.

You should get a copy of the research protocol when you sign the consent form. And you MUST sign a consent form!

If the study involves neuropsychologist testing, you should get a copy of results once the researchers are able to get it to you. difficult child 3 was part of such a study a few years ago, we got copies of the results within a few weeks. However, the testing was non-standard.

Marg

 

[confuzzled]

thanks to both of you for the replies. of course i'll call and get more details but i didnt want to come of as completely selfish.

i think we might do it....we pretty much have nothing to lose, and everything to gain at this point.

thanks

 

[svengandhi]

I doubt that many people participate in clinical trials only for the greater good of humanity - even terminally ill patients who sign up may wish that the treatment they are getting will be their miracle cure. There is nothing wrong with mixed motives in a situation like this and it's not selfish because you are letting your results be used towards the whole.

I had my oldest son evaluated for a clinical trial on PANDAS. Although he was not accepted because his symptoms were not bad enough (a good thing), I did get an insight in to the condition and was finally set on a track for getting treatment... I would do another trial if something appropriate came up.

 

[cubsgirl]

Confuzzled,

When I was working my job was as a clinical project manager. I oversaw various studies from concept through to publication.

If you have any questions please feel free to PM me and I'll see if I can answer them or find the answer for you.