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Are Clinical Trials really legit
Posted: Friday, March 9, 2012 1:46 PM
Joined: 3/8/2012
Posts: 2

I am new to alzconnected so I hope I am not breaking any rules by telling what happened with my wife in a clinical trial.  She was diagnosed with Alzheimer's when she was 59 which was nine years ago.  She has been on Aricept and Namenda for most of that time.  Her progression has been slow up to the last 9 months.  Last year I opted to put her in a clinical trial.  The medication is supposed to actually improve the memory and consisted of shots every two weeks along with MRI's and testing.  It is a double blind study so there is no way to know if she was actually getting the drug or not.  I was in hopes that she would get the drug and I would see an improvement.  The reason I question the legitimacy of the studies is because the testing was very biased in the way the questions were asked and by who administered the test.  The scores for the most part kept getting better but I could tell that my wife was actually getting worse.  The other thing that makes me question the legitimacy is that she was kicked out of the program after six months.  The reason that was given is that the drug company said she did not have Alzheimer's but instead she had Superficial Siderosis and that she should have never been admitted into the study.  All the doctors disagreed but to of no avail.  Now I have my own theory but of course there is no way to prove it.  I believe that she was getting the drug and it was not working because I was actually able to see a decline over the six months.  What better way to make your drug look better than remove the subjects that the drug is not working on.  The whole thing just seems fishy to me.  I would like to believe that the studies are a good thing but it sure makes you wonder if the trials are all they are cracked up to be.  I would be interested in hearing what other people think and what their experiences have been with clinical trials.
Posted: Friday, March 9, 2012 2:46 PM
Joined: 12/6/2011
Posts: 3326

The U.S. Food and Drug Administration oversees drug trials. Write them a letter about your suspicions at:  


Office of Criminal Investigations 

Food and Drug Administration 

7500 Standish Place 

Rockville, MD 20855   
or call the main number at FDA and ask to speak with someone about possible fraud in a drug clinical trial:  1-888-463-6332 

Posted: Saturday, March 10, 2012 10:46 AM
Joined: 3/8/2012
Posts: 2

Thanks for the info I had no idea where to turn.
Posted: Saturday, March 17, 2012 4:20 PM
Joined: 1/3/2012
Posts: 189

Every medical trial, is registered with the US FDA and has a registration number for that specific trial. So only do trials that have US  FDA registration number. I was involved in a early detection one. Do you usually get a financial benefit for participating in a trial also. The Alzheimer's Association has a free trial match service.