Topic: Clinical Trials Results - you have the right to be informed

Clinical trial participants must know that the research community has an obligation to communicate to you the results of the study.

You may not find the wording on the consent form, but you should insist on having it added or request  adding the language in your own words.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clinical Trials Results - you have the right to be informed

Marion,

This such a helpful & timely reminder.  Does it also apply for trials that are still ongoing? 

Caroline

Re: Clinical Trials Results - you have the right to be informed

Caroline...absolutely.  In fact, it applies to all clinical trials - past, present, and future.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clinical Trials Results - you have the right to be informed

Thanks so much, Marion!  I just emailed my mom's ONC.  I was about to post an update on her experience on Cabozantinib, but I'll wait to hear back from the dr and include that information in my post.

Big hugs back,
Caroline

Re: Clinical Trials Results - you have the right to be informed

Sorry for the misunderstanding, Caroline.  Patients are entitled to receive "the end results" only.  In other words, the study has to be completed. It is only then that the researchers are able to evaluate the data and release the information which (generally) is published. 
However; patients enrolled in these trials rarely read published material.
Therefore, it is the obligation of the study coordinator to inform all participants enrolled in the study of the clinically, validated outcome of the clinical trial.
Hope this helped.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Clinical Trials Results - you have the right to be informed

Ah, got it.  Well, let's see if I can get any useful information from the dr anyway.

Thanks again!
Caroline

Re: Clinical Trials Results - you have the right to be informed

Great, Caroline.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER