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Imaging Dementia-Evidence for Amyloid Scanning study
BadMoonRising
Posted: Saturday, April 22, 2017 6:58 PM
Joined: 4/22/2017
Posts: 282


AKA the Ideas Study. Is there anyone here who has participated in this study? I'm seeing a new neurologist/dementia specialist next week and requesting enrollment.

www.ideas-study.org


Larrytherunner
Posted: Monday, April 24, 2017 12:20 PM
Joined: 2/26/2016
Posts: 186


My take on this study is that it is about trying to get medicare to pay for PET scans, which would be a huge  financial windfall for companies providing this service. I don't see how you personally could benefit from this study. PET scans are helpful in research but are they helpful in determining treatments? I don't think so?

There is no mention of who is paying for this study. It would also be interesting to know if doctors are getting paid to recruit patients into this study. Does anyone else have a different take on this topic?


Mimi S.
Posted: Monday, April 24, 2017 5:32 PM
Joined: 11/29/2011
Posts: 7035


Hi Bad Moon Rising, 

I would love to have a PET scan, if it is Pittsburg one that shows actual deterioration as time progresses.  Especially for those of us who ave diagnosed more than five years and have a lot of "Doubting Thomas's"  You must be misdiagnosed not to be showing a major decline.

Helpful in determining treatment? Possibly not until we are further along in research as to when to begin various treatments. But each scan gives a bit more information.


BadMoonRising
Posted: Monday, April 24, 2017 7:25 PM
Joined: 4/22/2017
Posts: 282


Medicare is paying its share for those beneficiaries who are 65 or older and eligible to participate in this study. Participants are encouraged to contact their secondary insurer to determine whether the insurer will cover the remainder of the costs. Since I live near a city where it is extremely easy to participate in these studies, I decided well before my last neuropsych exam that I wanted in on this one.

On an individual level, I think the biggest impact will be on those participants and/or future Medicare beneficiaries who have been diagnosed with the wrong cognitive impairment. Treatment should be consistent with underlying disorder, yes? If the study can demonstrate that a more precise diagnosis can change the outcome for a significant number of beneficiaries, Medicare is going to buy in. I don't think I'm explaining this very well...LOL. Maybe that's why there is a FAQ link on the page I cited in my original post.

I just reviewed the criteria and I may not be eligible to participate. Dang, I'll have to work on this before Friday. It is possible I do not have amyloid plaques. If so, I'm outta here. Just kidding...sort of ...kind of.

 

 

 

 

 


jb16
Posted: Wednesday, May 31, 2017 12:35 PM
Joined: 5/19/2017
Posts: 7


I am trying to get my LO enrolled as well for a better diagnosis (in conjunction with MRI). My LO was diagnosed with MCI 4 years ago at age 65 and only after being prescribed Excelon 7 months ago did her scores on the MMSE tests plummet. This prompted a recent Alzheimers diagnosis and radical change to her independence (no more driving). There are other issues occurring and we are not totally convinced it is Alz. (She for one does not believe it at all.) Could it be another form? Could a different course of treatment then make a difference? 

Even if not immediately beneficial for her, it seems this would greatly contribute knowledge to the search for an effective treatment or even cure someday. 

I hope you are able to get into the IDEAS study as well. 


BadMoonRising
Posted: Saturday, June 3, 2017 10:21 PM
Joined: 4/22/2017
Posts: 282


I forgot to update what's happening...or not happening. I scored a 28/30 on the Montreal Cognitive Assessment so my new Neurologist said she couldn't sign me up for the study. She did offer to order the Amyloid Pet without having me participate in the Study but I told her it was my understanding that my secondary insurance would not cover it if Medicare denied the claim. 

Dumb me. I actually practiced some of the answers to the questions we all know we're going to be asked. For example, date, place, including the floor of the building. If I had not spent the time in my car repeating the date and the address I probably would have missed those answers and qualified for the study.

I'm going in for a CPAP titration this week even though the neuro said that my mild sleep apnea would not have resulted in the diagnosis of EO Alzheimer's. Still, it would be great if the CPAP improves my cognition.

 I could make a decent argument why I am qualified for the study but I've looked over the referral form and I can see why the doc felt she could not refer me with my 28/30 MoCA score. OTOH, it would be totally appropriate for her to note the discrepancy between the MoCA result and the 8 hour NeuroPsych evaluation and request that I be enrolled. 

 jb16, like your spouse, I too, was diagnosed with amnestic MCI a while back. If I manage to get enrolled, I'll update you with the info.  


Mimi S.
Posted: Sunday, June 4, 2017 8:29 AM
Joined: 11/29/2011
Posts: 7035


BadMoonRising,

What would happen if you got in touch with the person you spoke with about the test results and told her what you did."Nothing ventured, nothing lost."

 I know someone who is so afraid of getting Alzheimer's that she requests the mini-mental yearly. She puts herself to sleep at night counting backwards by seven.  Of course, her test results are worthless. And that is another reason the mini-mental can be worthless.  It is only somewhat reliable in screening for Alzheimer's. People with other types of dementia and those who are highly intelligent can easily pass. 


BadMoonRising
Posted: Tuesday, July 18, 2017 10:54 AM
Joined: 4/22/2017
Posts: 282


I came back to post an update and just saw Mimi's post. I did not call the neurologist but her office called me regarding the progress (or lack thereof) of getting my CPAP ordered.  In the course of the conversation she questioned whether I wanted to participate in the study because someone had written in my chart that I was not interested. That has been fixed so I will be having lab work completed in the next few days and have a follow up appt with the Neuro. If all goes well - I'm in.

BadMoonRising
Posted: Wednesday, July 19, 2017 7:28 AM
Joined: 4/22/2017
Posts: 282


Perfect timing for me.

The Washington Post is reporting that many of the Study's participants who were diagnosed with MCI or Alzheimer's are not showing any plaques. (More likely the patients were diagnosed with a "Rule Out Alzheimer's".) If this holds true after the study is completed, I think it is likely Medicare will cover Amyloid Pet Scans in the future.


Mimi S.
Posted: Wednesday, July 19, 2017 6:37 PM
Joined: 11/29/2011
Posts: 7035


JB.  What was the diognostic process? Compare with that given in Doraiswamy and Gwyther's  The Alzheimer's Action Plan. The neuro-psych is often omitted but is so important.

Bad Moon Rising. Depending on what the first Pittsburg PET scan shows, you need at least two scans to show the change in the brain.

To me, it is a positive diagnosis, thus refuting those who claim there is no definitive diagnosis until autopsy.  Since the PET image shows the deterioration in the brain, if it is there, it might be more accurate than the neuro-psych in determining type.  Knowing the type is very important is giving medications.

Relationship with progression of MCI. I don't know. All I know is some tie MCI progresses and sometimes it doesn't. The scientists and neurologist might know more than I do.


BadMoonRising
Posted: Wednesday, July 19, 2017 9:02 PM
Joined: 4/22/2017
Posts: 282


The three fluorine 18- labeled tracers have been approved for the study. (Florbetapir, Florbetaben and Flutemetamol). The scope is limited to examining the amount of amyloid found on the scan. IOW, I don't think there's a need for a second scan.

I thought the Washington Post article was deficient in that it neglected to mention that the participants were not randomly chosen from the general population of patients diagnosed with MCI or Alzheimer's. Rather, the dementia specialists only refers those patients with somewhat complicated cases with the understanding that the patients' treatment depends on the outcome of the scan.

IMO, the way it was explained in the article made it appear as if many of the referring physicians were idiots.

ABC news presented a much more coherent article regarding the study than the Post. Not surprisingly, I found the ABC article via the Alz Association website.


BadMoonRising
Posted: Wednesday, July 19, 2017 9:18 PM
Joined: 4/22/2017
Posts: 282


JB16,

I referred myself to a neurologist who had been identified as a dementia specialist on the IDEAS website. I had already obtained an MRI from my PCP and an evaluation from a neuropsychologist. TBH, I would not have sought inclusion in the study if the neuropsychologist had not diagnosed Alzheimer's. I was upset and p.o.ed. I'm still p.o.ed.

Perhaps you could follow a similar path and identify an enrolled Dementia Specialist via the IDEAS website. Call and ask the DS's office if the doc is still accepting patients for enrollment in the study. If s/he is, maybe you can get your wife in for an evaluation.

 


Frank Bordell
Posted: Friday, July 21, 2017 10:31 AM
Joined: 7/21/2017
Posts: 1


Has anyone heard if the Australian research of using ultrasound to "destroy" the amyloid plaques in the brain is now being tried in the U.S.?


BadMoonRising
Posted: Friday, July 21, 2017 8:46 PM
Joined: 4/22/2017
Posts: 282


Frank,

I haven't found anything that indicates there are any ultrasound/human brain studies in the U.S. The latest I could find was one in Toronto where the ultrasound was used to temporarily open up the blood brain barrier in one human subject.

Australia used a similar technique to introduce antibodies into the brains of mice, but not humans.


BadMoonRising
Posted: Thursday, September 21, 2017 3:08 PM
Joined: 4/22/2017
Posts: 282


And so it begins...

Not only was the amyloid scan positive, the amount of plaque was apparently greater than would be expected based on my symptoms. I left the neurologist's office with a copy of the report, a diagnosis of Alzheimer's, a prescription for Aricept and a follow up appt in December.

If contacted, I intend to participate in at least one of the two clinical studies being offered to IDEAS participants.


Keep It 100
Posted: Friday, September 22, 2017 5:15 AM
Joined: 2/26/2017
Posts: 489


Wow, I am sorry to hear that. All my best to you....

It seems by what you say in terms of high amount of plaque, along with your very strong verbal/communication/insight, etc, you must have a very, very high cognitive reserve. My husband's strong cog reserve masked his deficits really well, so well, that by the time he reached his threshold and fully emerged with unmistakable symptoms, he was well in to stage 4, and now moving forward rapidly into stage 5. He was still functioning highly in social situations with conversation and humor, playing and competing in high level tennis, when he took his first MoCA and scored at 13. Casual observers still cannot tell there is anything amiss with him....

I am curious as to what other studies the IDEAS participants are being offered. My husband was postitively dx'd 18 mos ago via lumbar at USC Keck, and is now in the nilotinib study at Georgetown. The G-town research team has done lumbar and amyloid PET at baseline for trial, but unfortunately they have not been shared with me yet and I won't know until the end of the trial in 9 more mos.  

Warm regards, May


BadMoonRising
Posted: Sunday, September 24, 2017 9:22 PM
Joined: 4/22/2017
Posts: 282


Hi Keep IT 100,

Thanks for the condolences. It's going to take a while for me to process the official diagnosis. Yes, you're probably right regarding my level of cognitive reserve because my neuropsych eval reported my profile as "mildly impaired when demographically corrected" but without the correction, my "executive functioning and short-term nonverbal memory were severely impaired".  Last week, my MoCA was 29/30. That said, how the heck did your husband continue to function at such a high level for so long? That's truly amazing.

I've been spending the last few days researching how the Scan's particular Z scores were calculated and whether my scores are as bad as they appear. So far, I think the number of plaques are in the "frequent" category but not near the top, either.

The add on studies for the IDEAS participants are described here: alz.org/ideas/

Unless you and you spouse are traveling quite a distance to Georgetown, I'm assuming we both live on the Right Coast.


Keep It 100
Posted: Monday, September 25, 2017 6:21 AM
Joined: 2/26/2017
Posts: 489


Thanks for the reply, and wow, this disease really is perplexing! With such high function it is really something that you have been diagnosesd. 

My husband's very high verbal language capabilities keep him "undercover", for the most part, but everything else is completely shot; executive function, visual spatial, short term memory, and simplist math are all toast. Orientation is starting to go, too. At a BBQ yesterday, making meaningless small talk and playing ping pong, he looks totally normal. But ask him to do something like turn on or off a light...and that could send him in to mass confusion.

And yes, this California native recently relocated to Virginia, for the simpler and less stressful lifestyle. I don't miss the mass of humanity clogging up roads and freeways, making what used to be fun and simple excursions to the beach or museums in my youth now all-day stressful events... and I have our frequent trips up to G-town to remind me how unpleasant traffic is. I just miss my mountain views, sweeping valley vistas and dry weather!

Take care! 


BadMoonRising
Posted: Monday, October 16, 2017 12:02 PM
Joined: 4/22/2017
Posts: 282


I have agreed to participate in two of the add-on studies, the Brain Health Registry and the Amyloid Neuroimaging and Genetics Initiative. I expect to be contacted this week by the researchers at UCSF and Indiana University.

God, I hope they don't speak to me as slowly as the Alz Assoc rep did. I had to clench my teeth so I wouldn't interrupt the ongoing reading of the prepared 'script.


jb16
Posted: Wednesday, December 20, 2017 4:32 PM
Joined: 5/19/2017
Posts: 7


My mom participated in the IDEAS Study and had the PET scan with amyloid tracer in July followed by another neuropsychological exam. It resulted in a change in diagnosis from Alzheimer's to Fronto-temporal dementia, the semantic variant (Primary Progressive Aphasia) with the behavioral variant as well. This diagnosis made much more sense to us given the difficulty she has with language and the meanings of "things." 

In May she had been diagnosed with Alzheimer's by the neurologist she had been seeing for 5 years. The trouble with that diagnosis was that since he had put her on Excelon for the prior 6 months her scores on the MME plummeted from 28/30 to 16/30 -while on it. Also, while she exhibited many symptoms of ALZ, she did not have many others. She can navigate almost anywhere, keeps her accounts up to date every day online and knows them to the penny, etc.

I consider the IDEAS Study a benefit as clearly the medication she was prescribed was not working for her. Also, they had increased the dosage which was making her ill. So now she is off of it. Granted, there isn't really anything else for her, but we have a better idea of the path this may take.

I will keep you in my thoughts as you go through this for yourself. I hope that you are able to get some answers.


BadMoonRising
Posted: Saturday, December 23, 2017 5:27 PM
Joined: 4/22/2017
Posts: 282


jb16,

Thank you for the update. I wish my neurologist had spent more than a few seconds looking at my PET. Did your mother's test report interpret the scan as consistent with fronto-temporal dementia or was that the diagnosis by your mother's physician? I'm curious because mine never specifically mentioned Alzheimer's.

I expect the study will demonstrate that a huge number of people with dementia do not have Alzheimer's. If that turns out to be true, Medicare will pay for the scan... until a blood test (that is currently being investigated) proves to be as accurate as the amyloid PET.