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Has anyone heard about this trial?
Posted: Wednesday, June 9, 2021 7:59 PM
Joined: 6/9/2021
Posts: 5

Hi, I'm looking for non pharmaceutical trials for my LO to participate in and I came across this one. Does anyone have any experiences signing up for clinical trials for a LO and how to tell if one will be a good fit?

Posted: Tuesday, November 2, 2021 9:17 PM
Joined: 4/8/2021
Posts: 11

I have tried to enroll in 3 trials for my LO.   It is somewhat involved.  There is a long legalistic document, and depending on the study a screening process that includes memory tests, blood tests and PET or MRI scans.  We were not qualified for two of the trials which were for pharmaceuticals.   We are enrolled in the IDEAS study which is looking whether PET scans can be used to improve outcomes by offering the physician a definitive diagnosis.  We have done the scan but not received the results for a few more weeks.

I had noticed this study you asked specifically about.  My LO would be very resistant to surgery and especially since the surgery may result in a placebo device.   

I intend to ask our neurologist about it when we get his resort on the PET scan and keep trying to get her into a trial.  

I did find it a positive although disappointing experience as it provides some engagement with staff and some sense that you are trying to make a positive out of a negative experience by helping science.