'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

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circular
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'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby circular » Mon Feb 17, 2020 10:18 am

Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study

I was willing to travel every two years to get the MRI and PET scans, but after talking to their front person for prospective participants, I'm miffed that she could not adequately articulate whether I would have access to any of my results. I think she was saying that if anything turned up of 'clinical' significance I would find out, but she couldn't delineate what situations would be considered clinically significant. Would it require evidence of Alzheimer's? Not Alzheimer's but higher than average plaque accumulation? Evidence of brain hypometabolism of glucose? Despite how important this study is, I admit to feeling selfish. Why go through that much trouble if they think they own my results???????????????????????????? I recognize their restriction (though vague) isn't surprising given our paternalistic disease care system, and maybe I'm a bit too much of a rebel at times because I do understand what I suspect their reasoning is, but I debated putting this in our Activism thread. Should we begin advocating that researchers should not own data about us, similar to interest in genetic studies allowing that the patient owns their data? ... Here all you ApoE4s, give us your time and energy and sometimes discomfort so we can further our careers while we give you little in return.

Would I feel this edgy if I always got 8 hrs 45 min sleep? :shock: :lol: 8-)
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby NF52 » Mon Feb 17, 2020 6:26 pm

circular wrote:Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study

I was willing to travel every two years to get the MRI and PET scans, but after talking to their front person for prospective participants, I'm miffed that she could not adequately articulate whether I would have access to any of my results. I think she was saying that if anything turned up of 'clinical' significance I would find out, but she couldn't delineate what situations would be considered clinically significant. Would it require evidence of Alzheimer's? Not Alzheimer's but higher than average plaque accumulation? Evidence of brain hypometabolism of glucose?...
Hi Circ,

First rule of life: We are always allowed to be edgy!! Not having enough sleep just makes it more rewarding :)
This link from the Banner Institute intrigued me, so I did some digging.
Before I get to your link to the trial above, full disclosure: I am in the final stages of the cancelled Generations 1 trial of a BACE-1 inhibitor vs. placebo for 4/4s, which was co-sponsored by the Banner Institute (the Gene Match program is theirs) and Novartis.

I also recently was invited to be a one-year member of the Alzheimer's Clinical Trial Consortium (ACTC) Research Participant Advisory Board. The people on this Board are advocates for just the kind of "participant-centered" approach you and others reasonably expect, and luckily have the support of some big guns through a 35+ consortium of research sites looking at how to improve AD trials.

The Participant Advisory Board has the following aims (I've bolded the ones I think are most relevant to your "miffed" reaction:

Aims 1: Provide guidance on study design including the following areas:
§ Ethical considerations
§ Disclosure of personal and study research results
§ Privacy
§ Recruitment approaches that engage diverse communities and increase trial
generalizability
§ Burden for participants, study partners
§ Selection of therapeutics, balancing risk and potential benefit

Aim 2
Provide feedback on network conduct:
§ Data sharing
§ Reporting topline results
§ Sharing results, assignments with participants
§ Research focus


As a group, we advocated for not just explaining the reasons for the study design (Aim A), but as much as possible sharing results with people. In the past, part of the reason for not sharing PET scan results and MRI results, was because the purpose of the study itself was to figure out what was an "elevated" level of amyloid. It took years of following people to say, in effect, "we think X is an elevated level of amyloid, because it seems to be associated with an increased risk of progression in maybe 3-6 years to subtle changes in cognitive tests, and maybe in 6-10 years to subjective cognitive impairment and in 10-15 years possible diagnosis of MCI." But even last week, scientists were at pains to say, "we just don't have enough data to personalize this prediction for any one person; these are real trends, but only over time and across groups."

This is slowly changing as reliable definitions of "elevated" or "intermediate" amyloid and tau imaging occur. So while Generations 1 did not tell me whether I had elevated amyloid beta on my PT scan in 2017, the study Coordinator will be able to tell me in March at my last visit. She will also be able to give me some idea of how my cognition changed, if any, over the last 2 years, but won't have or be able to give me a detailed summary of which areas of my brain show what changes.

It seems likely that now recruitment efforts in many trials may first do some basic genotyping (ApoE 4) and some basic cognitive tests (to rule out people with MCI or AD) and then invite people to a regional center for an expanded, in-depth explanation of the study aims, requirements, imaging and disclosure of results. I would expect that some trials may require people with "elevated" amyloid and/or "elevated tau" and thus would disclose this. Others may wish to not disclose this information without knowing how predictive it is, but may be able to say "after the trial has ended we will disclose it to you." (For example, for obvious reasons, I don't know whether I was on the Study Drug or a placebo in Generations 1, but will find that out sometime in spring or summer, once all trial visits have ended.)

As for the ApoE 4 trial listed, checking the NIH website shows that it is actually a very long-running trial of a small group of people recruited as early as 1998. The group doing this is seeking to add to the knowledge of both the natural course of brain aging in ApoE 3/4, 2/4 and 4/4 individuals, and to determine what areas of the brain are significant for changes over time that show increased risk, as opposed to "normal" brain aging. It appears from the NIH website that this trial was renewed in 2018 and requested continued funding for 5 years. Given how long it's been going, it probably will be re-funded each year. It may be that they are now seeking to add new participants as some age-out, drop out or otherwise leave the trial.

Here is an explanation on its NIH application:
PUBLIC HEALTH RELEVANCE: Our longitudinal research program is designed to characterize the biological and cognitive changes that precede the onset of memory and thinking problems in people at three levels of genetic risk for Alzheimer's disease (AD), develop faster ways to test prevention therapies, and make it possible to find treatments that work without losing another generation. It will use an expanded battery of brain imaging techniques, spinal fluid and blood samples, and memory and thinking tests every two years for the continued study of 160 people with 2, 1 or no copies of the APOE4 gene every two years. It will continue to detect and track AD before the onset of symptoms and determine the extent to which different measurements predict the onset of memory and thinking problems; it will investigate the extent to which the growing number of confirmed genetic risk factors contribute to different elements of the disease; it will help us prepare for the Alzheimer's Prevention Initiative (API's) next prevention trial and help to advance a new era in AD prevention research.
Project InformationProject Information:5R01AG031581-19

If you are interested in other non-drug imaging studies, you may want to check this site, which appears to be still recruiting for a study of PET tau: http://adni.loni.usc.edu/about/ ADNI (Alzheimer's Disease Neuroimaging Initiative) has been a goldmine of data for researchers for years, as scientists look for additional data analyses of longitudinal scans. As far as I know, all the ADNI studies, and the ApoE 4 imaging studies by Banner Institute and the Mayo Clinic, are totally government-funded with the data required to be anonymously available for qualified researchers to use.
Hope this helps!
4/4 and still an optimist!

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby donbob » Tue Feb 18, 2020 6:16 am

circular wrote:Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study

I was willing to travel every two years to get the MRI and PET scans, but after talking to their front person for prospective participants, I'm miffed that she could not adequately articulate whether I would have access to any of my results. I think she was saying that if anything turned up of 'clinical' significance...Would I feel this edgy if I always got 8 hrs 45 min sleep? :shock: :lol: 8-)

I had these same thoughts. However, I try to live each day as if I have the potential to develop Alzheimer’s. I was able to infer through the Generations Study screening process quite a lot of information about my status. A sleep study/Alzheimer’s research revealed I have sleep apnea. I had no clue prior. Much information has come my way by participating in Alzheimer’s research. Best wishes.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby circular » Fri Feb 21, 2020 9:16 pm

donbob wrote:
circular wrote:Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study

I was willing to travel every two years to get the MRI and PET scans, but after talking to their front person for prospective participants, I'm miffed that she could not adequately articulate whether I would have access to any of my results. I think she was saying that if anything turned up of 'clinical' significance...Would I feel this edgy if I always got 8 hrs 45 min sleep? :shock: :lol: 8-)

I had these same thoughts. However, I try to live each day as if I have the potential to develop Alzheimer’s. I was able to infer through the Generations Study screening process quite a lot of information about my status. A sleep study/Alzheimer’s research revealed I have sleep apnea. I had no clue prior. Much information has come my way by participating in Alzheimer’s research. Best wishes.

That’s good perspective donbob. On the one hand I’m interested in helping, on the other hand I already have constant tinnitus, so getting in an MRI every two years probably isn’t wise for me. Maybe another study will work better for me.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby donbob » Sat Feb 22, 2020 5:23 am

circular wrote:...That’s good perspective donbob. On the one hand I’m interested in helping, on the other hand I already have constant tinnitus, so getting in an MRI every two years probably isn’t wise for me. Maybe another study will work better for me.

You are right about protecting your hearing. I also have tinnitus from 1970. I meditate focusing on the ringing. I mentioned that to the yoga teacher in casual conversation. She really scrutinized my face to see if I was pulling her leg. But her response was “that’s a great idea.” She also teaches meditation. She reminds me of the lake when there is absolutely no wind. Calm, smooth and very deep.
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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby circular » Sat Feb 22, 2020 12:15 pm

donbob wrote:You are right about protecting your hearing. I also have tinnitus from 1970. I meditate focusing on the ringing. I mentioned that to the yoga teacher in casual conversation. She really scrutinized my face to see if I was pulling her leg. But her response was “that’s a great idea.” She also teaches meditation. She reminds me of the lake when there is absolutely no wind. Calm, smooth and very deep.

Sorry you have this too! All to common and even more so as environment noise pollution steadily increases.

I get you re meditation!

Although, for many years I've just tuned the tinnitus out. I seldom even notice it anymore (unless I happen to think about it like now), but I don't want it to get worse and then I have to desensitize myself to it again. What helped me was just accepting that there was nothing to be done about it (yet). After that it really faded into the background.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby NF52 » Sat Feb 22, 2020 2:14 pm

donbob wrote:You are right about protecting your hearing. I also have tinnitus from 1970. I meditate focusing on the ringing.

circular wrote:Sorry you have this too! All to common and even more so as environment noise pollution steadily increases...Although, for many years I've just tuned the tinnitus out. I seldom even notice it anymore (unless I happen to think about it like now), but I don't want it to get worse and then I have to desensitize myself to it again. What helped me was just accepting that there was nothing to be done about it (yet). After that it really faded into the background.
I am a member of the tinnitus club also since 2007, although I suspect I had a very low level before that. It got much worse suddenly when I had a bout of vertigo, with an acoustic neuroma ruled out. Since then, I too can mostly tune it out, except sometimes at bedtime.

My understanding is that it comes from high frequency hearing loss above the level of speech sounds and the brain moving in to those neurons to create sound, similar to phantom limb pain. I test as having a moderate loss at those frequencies, but so far no loss at speech thresholds. If anything I have some hyperacusis (sound sensitivity) at high frequencies and so don't enjoy loud movie theaters or loud sounds at high frequencies.

FWIW, the MRI sounds were like a parade of street construction noise (jackhammers, banging, etc.) which did not lend themselves to meditation, but I listened to classic rock through headphones and once even dozed off briefly!
4/4 and still an optimist!

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby circular » Sat Feb 22, 2020 3:31 pm

NF52 wrote:I am a member of the tinnitus club also since 2007, although I suspect I had a very low level before that. It got much worse suddenly when I had a bout of vertigo, with an acoustic neuroma ruled out. Since then, I too can mostly tune it out, except sometimes at bedtime.

My understanding is that it comes from high frequency hearing loss above the level of speech sounds and the brain moving in to those neurons to create sound, similar to phantom limb pain. I test as having a moderate loss at those frequencies, but so far no loss at speech thresholds. If anything I have some hyperacusis (sound sensitivity) at high frequencies and so don't enjoy loud movie theaters or loud sounds at high frequencies.

This is me too! The hyperacusis is even a worse problem because I don't seem able to tune out the loud noises. I just have to get away and stay away.
NF52 wrote:FWIW, the MRI sounds were like a parade of street construction noise (jackhammers, banging, etc.) which did not lend themselves to meditation, but I listened to classic rock through headphones and once even dozed off briefly!

Classic rock or spa music -- those are good if contrary options for an MRI. I chose spa music but there wasn't any playing once I got in there :lol: I was really worried about the MRI, but for some reason I found it to be hilarious! I listened to those banging sounds and drifted on a humorous existential wave.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby SusanJ » Sun Feb 23, 2020 5:49 am

NF52 wrote:It got much worse suddenly when I had a bout of vertigo, with an acoustic neuroma ruled out...If anything I have some hyperacusis (sound sensitivity) at high frequencies and so don't enjoy loud movie theaters or loud sounds at high frequencies.


Same here with tinnitus, some bouts of vertigo and tests to rule out acoustic neuroma in my 40s.

circular wrote:This is me too! The hyperacusis is even a worse problem because I don't seem able to tune out the loud noises. I just have to get away and stay away.


Me three. I now take ear plugs to the movies because it's too loud, especially the previews. YIKES, the noise almost hurts.

And I've come to view my tinnitus as my white noise for sleep, so it really doesn't bother me at night.

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Re: 'Brain Imaging, APOE & the Preclinical Course of Alzheimer's Disease Study'

Postby circular » Sun Feb 23, 2020 7:48 am

SusanJ wrote:Me three. I now take ear plugs to the movies because it's too loud, especially the previews. YIKES, the noise almost hurts.

And I've come to view my tinnitus as my white noise for sleep, so it really doesn't bother me at night.

I haven't been to a movie in many years because of the loud noise. I just can't enjoy it even with earplugs.

I now have Bose noise cancelling headphones that I really like for my hyperacusis. I can go on neighborhood walks and listen to music or a podcast and not hear any of the nearby road noise. I can get off my regular cross country flights with more energy. It helps in smaller ways too, but these were really big improvements.
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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