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Hello fellow caregivers. She was diagnosed yesterday with FTD or early onset Alzheimer's and the clinician seems to be in a hurry for a decision. Has anyone taken part in a clinical trial to compare an investigational study drug called BAN2401 to placebo?


Has anyone found it beneficial? I will do anything that will make her quality of life better. Her neurologist prescribed Aricept but the clinician said she can't take that if she is to do the study.


Any and all advice would be tremendously appreciated.

Just my 2 cents,, my dad took Aricept,, we were told up front it is a crapshoot,, may work, may not, no one can prove either way. Did it help my Dad? who knows. So in many ways I feel like it was sort of a "clinical trial" on its own, and no proof either way for us. My MIL had "dementia",, they gave her Aricept for a few years,, again,, no way to know if it helped or not. So why not try the clinical trial? It may or may not help, she may or may not get the "real drug",, but she for sure will get much more testing and all of it will be covered by the study. ( I work at a major teaching and research hospital and have been active in several trials as a clinician) If it does work,, Hooray! You have helped your sister and possibly many more to come. And most studies are limited in time, so you could always start the Aricept once it is over if you think it will help. Good luck,, this disease has no cure.
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marcieg Sep 18, 2020
Thank you so much! This is such a great forum to get advice from people who have been there. I really appreciate your time in writing this. Very insightful.
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My hubby was diagnosed 5 years ago with IgA Nephropathy (also called Berger’s Disease) for which we were told there is no definitive cure for. He was offered a chance in a clinical trial, where you either get a placebo or the actual drug being tested. He would probably be on dialysis within a year so We figured he had nothing to lose. After phase 1, he was showing improvement. Was offered to participate in Phase 2, which he did. By the end of phase 2, I was almost sure he was receiving the “study drug” because all his labs were improved. He has been in remission since that time and I am so thankful we made that decision. He has now been diagnosed with LBD, and as his POA if offered a clinical trial I would say “why not”, because none of the medication he’s taken thus far has helped.
Sorry this response is so long but felt it might help Since we have been there. Prayers for you and whatever decision you make.
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Her doctor may have been pushy because trials fill up quickly. Your sister is only 61 and, as long as the rest of her health is good, I think it is worth her participation in the trial. She's already had the misfortune of being diagnosed with FTD and none of the drugs - Aricept included - has been shown to alter the final outcome of the disease. For 18 months at least, she will get excellent care at no cost to her. It is a courageous thing to do being part of a clinical trial but it also comes with a lot of support and information about what is going on with her. If she does it, it will be part of her legacy.
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marcieg Sep 21, 2020
THANK YOU!
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Are you her appointed guardian since she now cannot make decisions?They are offering a choice of usual care or new drug vs placebo. Whoever is making the decision for her should have received a detailed information on both drugs. The way studies should be offered is by free choice and no pressure should be given to make that decision.
I am very familiar with clinical trials, both as a subject and as an investigator. In order to get funding, the details of the study are rigorous under the scruitany of the facility and drugmaker. When in the study, the subject is well taken care of.
If you are the decision maker and you experience angst, then choose usual care. Otherwise you will feel too worried if you made the right choice
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marcieg Sep 18, 2020
More excellent advice! I have a POA for her health care and she's not quite at the point yet of not being able to at least help with the decision. Glad to know the subjects are well taken care of. I'm wondering if the clinician was pushy because the trial is in the 3rd stage and is about to be filled up. I'm pretending I know what I'm talking about. I really have no clue.

Thanks so much for your time in writing this.
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Aricept/Donepezil isn’t known to improve FTD symptoms, from what I understand. In actuality, it may increase behavioral symptoms in some people.

But in any case, what you’re asking is so important that if I were you, I’d seek a second medical opinion.
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I worked in a Neurology clinic for years. We saw good results with Aricept. In a clinical trial, she may not be getting the new med but a placebo instead.
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pamzimmrrt Sep 19, 2020
I am really curious ( not judging, really just curious) how did you qualify good results since the progression of ALZ is vastly different for all patients? That is why we were told it was "better than nothing", and at our hospital we have found the same thing.. no way to quantify the results since everyone is different? I also work in a Neuro unit...
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So far, that I know of, there is no Alzheimer's drugs that are proven to improve or delay. It is difficult to study them due to huge numbers of patients needed in control group. She would be unlikely to take any meds that can help with symptoms. On the one hand we will never have new drugs if there are not brave individuals willing, on the other hand there will be problems with what drugs she can take, with forms, with blood work. And she may not even be on the next "new answer" to care.
I myself would not do it. But others may feel differently. Does your Mom have any input? Is she aware of her diagnosis? Would she have an opinion. Remember, she is getting a drug in a stage of development that leads them to believe it is safe to study in large numbers, but until it is approved it is still experimental.
Good luck with the decision.
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marcieg Sep 18, 2020
Thank you so much! Very straightforward information that will help a lot on deciding. Mom has been gone for 31 years, so no input from her, unfortunately.
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Gee, I'd want a definitive diagnosis before I started anything, and I've always distrusted any pushy sales pitch.
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marcieg Sep 18, 2020
I agree with you as I feel the same way about the pushy sales pitch. How do you go about getting a definitive diagnosis? Her neurologist wouldn't go that far. Maybe time tells?
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My father took Aricept and my wife currently with major dementia has been on similar meds. They say it slows down the progression, but it is imperceptible. I stopped the dollar drain. I would opt not to give it to them if I had a do over. I recommend the trial. Since dementia is irreversible, we need a cure and the trials are one method seeking just that.
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marcieg Sep 23, 2020
Great advice knowing you've been there. Thank you so much!
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This is not a decision to be made lightly or quickly. There is a long road ahead. Anytime a clinician is "in a hurry" to me is a bad sign. God bless the people who are risk takers and willing to participate in the studies...but you are the one likely to be making or helping to make decisions. In our town we have two primary and competing sources of medical care. I would find a neurologist who is experienced in dementias (check with your local Alzheimer's assn, even attend a support group as the members know all the inside poop to get a name) that is NOT from the same affiliation with medical center first one for another opinion. I would also not hesitate to touch base with your own or your sister's or both primary care providers or someone in internal medicine or family medicine. You have time to ask all the questions you want. IMO the Aricept is something people put so much hope in...but often don't see a real difference...though they can. It's an expensive drug and it's hard to finally realize there is not enough difference to keep using it, if any.
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marcieg Sep 22, 2020
Great advice! Thank you !
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