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Today I applied for participation in a study.


Here's the portion that I will be working on:


"You are being asked to participate in a medical research study of different ways to do interviews and tests about memory, thinking, and daily activities."


Here's the larger study title:


Eli Lilly and Company: "A Study of Donanemab Verses Placebo in Participants at Risk for Cognitive and Functional Decline of Alzheimer's Disease".


Today, I had blood taken.


If I have the genetic marker that they are looking for, I will participate in some paper memory testing, and also some memory testing on a tablet at my house.


I may have the short question version of their testing, or the longer question version.


The company is trying to figure out if they will use paper and pencil testing, or computer/tablet based testing for their larger study.


That's the extent of my involvement. My part is not a test of any medication.


My daughter is my study partner. If I qualify, she will be asked questions about my memory function.


The blood testing will be back in 4 weeks.


I was paid $84 for my participation today, as was my daughter.


There will be the possibility of two more sessions for me. One more for my daughter - all depending on the outcome of the blood testing.


The session took about 90 minutes.


It was quite interesting, and we met some very nice women in the waiting area.


Most of the participants that I met today seemed to be racial minorities, which is great, in my mind, since they are historically under researched.


I found out about the study from Instagram, since I tend to click on posts that come from creators that focus on exercise in the over-60 crowd, dementia care partners, etc.


I called the number in the ad, and answered some telephone questions. That person made the appt. for today.

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Good for you, cx!

I believe in science and doing research. We all know that more research is needed to find answers and to hopefully find better ways to treat these issues.

Maybe one day there will be a cure for all forms of cognitive impairment.

When I joined 23andme to test my DNA, I signed up for the scientific research and I participate in the research regularly.
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The thought of using any "mab" meds to potentially ward off or slow the progression of dementia or Alzheimer's is horribly frightening to me! What "mabs" can wind up doing to a person is worse, in the long run, than letting nature take its course! Especially for a person without dementia or AD but with only a genetic marker for it. Ugh.

Just don't let anyone talk you into trying a MAB product under ANY circumstances!!! It's over 1 year ago now that my 2 mab treatments totally ruined my quality of life.

Have fun with the study otherwise.
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Lea,

Can you please explain what mabs is? There’s so much to learn about these things.
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I find it fascinating how some people can remember incidents from long ago but don’t have the best short term memory.
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Need, the drug mentioned by CX is Donanemab, so I am guessing there must be a group of drugs that end with "mab" that lealonnie1 was referring to. And yeah, I don't mind doing something non-medical, but I am not about to put unknown things in my body, especially drugs that are experimental.

CX, I think there could be a sad reason you saw racial minorities in the waiting room. Some folks will look for ways to make some money and medical research is one way they can get some income.
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"Monoclonal antibodies (MABs) are a type of targeted drug therapy. These drugs recognise and find specific proteins on cancer cells. There are many different MABs to treat cancer. They work in different ways to kill the cancer cell or stop it from growing."

Source: https://www.cancerresearchuk.org/about-cancer/treatment/targeted-cancer-drugs/types/monoclonal-antibodies#:~:text=Monoclonal%20antibodies%20(MABs)%20are%20a,or%20stop%20it%20from%20growing.

Also an interesting source: https://en.wikipedia.org/wiki/Drug_nomenclature
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LL,
Absolutely no Mabs for me, right now!

I’ve been on this board for enough time that they scare me to death!

Sometimes, I feel like I should run any personal medical decisions by you guys! I’ve learned so much from you all! 🩷
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That's really awesome, of you to try , very brave to deal with your health issues head on, and for your daughter to help, so sweet!

Thanks for all the info on Mabs, never heard of it, really good info
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Anxiety,
This study is just answering questions. Not dealing with any health issues. 😀
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Thanks, Geaton and GG

I have gone through cancer with my husband, (prostate) dad, (bladder) Uncles, (lung) MIL, (non Hodgkin’s lymphoma) brother, (colon) but I don’t know all of the terminology for everything.
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I did some reading on the Canadian Alzheimer's Society web site and one of the criticisms of the last phase of this study was lack of diversity, that probably explains why so many of the other participants at your appointment were racial minorities.
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Nhwm, here is a good article from Mayo about mabs used for cancer:

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/monoclonal-antibody/art-20047808

The trouble with these drugs, for some people, is the brutal side effects they bring. Even with the Skyrizi mab used on me to try and calm down my immune system, I immediately developed tons of floaters in both eyes which are still present! While the 2 mab immunotherapies used together DID kill my cancer, the after effects have killed my quality of life. So it's always a trade off and I'd never take another mab again unless my life depended on it, as it did last Feb. Chuck was also told NOT to take any mab treatments (Or booster shots) for covid, btw, due to his liver transplant.
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Thanks, Lea.

I’ll read the article. It helps to have people who have lived through these experiences like you to show us how complex medicine is.
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I didn't make it clear above.

I qualified for this study because my mother has Alzheimer's.

So far, no memory problems for me. That's what my dd is going to be attesting to during the study, if I have the genetic marker and am cleared to continue.
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Update

Apparently, they were testing to see if I had any Tao Proteins, which is NOT what was explained to me. Got a call today, that I do not have those.

I was under the impression that they were testing for a genetic marker. The woman I spoke with said that they have a DIFFERENT trial, that would test for that. In that test, I would have to agree to take an experimental drug, if the genetic marker was found.

I'm not willing to do that, so this completes my involvement with the process, for now. ◡̈
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CX, thanks for the update, really good to know how some of those studies work
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Wow, how could you have info about another trial but be put in a different one? Seems to me someone somewhere either miscommunicated to you or made a mistake. And this is not a situation where there is room for mistakes.
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