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0120
Posted: Saturday, May 5, 2018 9:16 AM
Joined: 8/4/2017
Posts: 10


My mother has AD in early to middle stages.  I would really like to get her enrolled n a clinical trial but all of the ones I have investigated and inquired about at The Ohio State University Werner medical center either are full or the coordinator will not return my calls/emails ( these were suggested to my brother from the Alzheimer’s support group meetings he attended with my mother ).

Can anyone provide other suggestions?


Lane Simonian
Posted: Saturday, May 5, 2018 10:46 AM
Joined: 12/12/2011
Posts: 5108


You might try the Alzheimer's Association's trial match service.  Hopefully they can find something nearby for you and your mother.  Best wishes to you both.

https://www.alz.org/research/clinical_trials/find_clinical_trials_trialmatch.asp


0120
Posted: Saturday, May 5, 2018 2:43 PM
Joined: 8/4/2017
Posts: 10


That’s what we did at the chapter support group.  Just for kicks I did another profile and the results reveal the same clinical trials at OSU that I have inquired about in the past with the same study coordinator for all.  This person communicated with me at first but now will not answer my emails or return my calls

Thanks for the suggestion though


Lane Simonian
Posted: Saturday, May 5, 2018 10:36 PM
Joined: 12/12/2011
Posts: 5108


Sorry to hear that the clinical trial match path has already led to a dead end.  I am not sure if searching the NIH website will be any better, but here is the link.

https://www.nia.nih.gov/alzheimers/clinical-trials

Maybe someone else will have a suggestion as to how to get a non-responsive person to respond.


markus8174
Posted: Tuesday, August 28, 2018 10:12 PM
Joined: 1/25/2018
Posts: 752


I found similar frustration in attempting participation in clinical trials. It was always: " Oh, the patient has a history of acne as a teenager- well, sorry, she doesn't qualify for our study".... Hyperbole, but you get the picture. They wanted dementia patients under the age of 60 with no other medical problems, who were on no meds for any reason. That way they get "clean" results, uncomplicated by other possible contributing factors. I would try to investigate what the clinical trials you were looking into were studying. Much of the research out there is in repurposing existing meds for AD, or delivering them in a new way or dose. If you have a cooperative doctor you don't have to wait 5-10 years for some old drug to get approved for a new purpose, but can start you own 1 person study right away. Lets face it, if someone finds a completely new AD drug, and gets it approved, even if it costs $2.00 to make they will be selling it for $2000.00 or more per dose. They have to "recoup" their "research costs" (including giving their CEO a new villa in the Caribbean for all his hard work ).
My3sons123
Posted: Sunday, September 23, 2018 3:34 PM
Joined: 9/23/2018
Posts: 8


I found it impossible to get into any clinical trials. There are none currently available is the only response I've ever gotten.  My mom, her family (including myself) want to help advance research that could benefit others in the future, but it seem we won't get that opportunity. My mother also expressed a desire to have her brain donated to science after she passes. No one wants that either.
Donr
Posted: Monday, September 24, 2018 10:12 AM
Joined: 4/6/2014
Posts: 681


Her neurologist should know about any trials and also have information about what the trial is about. My wife's neurologist got her into a trial which provided her with a free Amyloid Pet Scan.
Horse Lover
Posted: Tuesday, September 25, 2018 5:24 PM
Joined: 11/4/2017
Posts: 124


I searched and found my study on clinicaltrials.org