I am supportive of my recently Alz diagnosed mother signing up for a clinical trial but so many of the drug trials seem to not have much success. I heard about a device trial that is similar to Parkinson's treatment and wondering if anyone has advice or experience with trials?
The site is www.MildAlzheimersStudy.com if anyone wants to look into it and offer advice.
My daughter turned down participation in a trial related to dense breast tissue. Although it was necessarily following the right protocols, the specialist running it was not highly regarded by her own doctor, and it seemed to be setting the specialist up to make money from the result. So ask all the questions you want to first, including how much you learn yourself about the results
I would definitely find out where the device trial is to see if your mom can participate. They will tell you up front if you will be getting the actual device or a placebo device to compare outcomes. If you are in a study like that, you won't know until the end if you got the real thing (as in the real test drug or placebo). If you are for sure going to get the real device being tested, what can it hurt? They will tell you about side effects found in earlier studies.
There are phases to trials - the early trials test the dangers, later they can test doses compared to nothing at all, later it may be to continue with what has worked well so far. If you have a teaching hospital nearby, check with them to see what they have going on. The only way to advance in protocols for disease is to test.
This is the web site for the Advance II trial that is aimed at health care professionals. The basic information is that the trial will last 4 years and everyone enrolled in the study will have a medical device implanted. It will be activated right away for 2/3of participant and inactive for 1/3. Then that 1/3 will be activated. It seems the plan is to leave the device implanted when the trial ends.
If you google search the web site you listed, it takes you directly to the questions that are asked if you express interest.
Every clinical trial has questions in advance - some are to rule out anyone who does not the the strict criteria they told the FDA that they would use. Other questions are to rule in those who DO meet all the criteria.
You can start at that point, and go along to see what happens.
You can withdraw consent to the study at any time.
They should give you a great deal of information about the possible risks and benefits of a trial. Be sure that you and your mother have all your questions answered before agreeing....
As a nurse (married to a clinical trials manager), my sense is that I'd ask her primary MD/neurologist about their recommendations, too.