The new P-tau 217 test is almost here

[squirrel320]

An interesting article on P-tau 217 in staging Alz, particularly in preclinical and prodromal phases.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7719022/

For those interested in a really in biomarkers, this is an excellent session. It likely requires a free Medscape registration. You need to complete the questionnaire before getting to a session where all the recent developments in biomarkers are covered by a number of experts.

https://www.medscape.org/viewarticle/10 ... 30_mscpedu

And the link to the new staging criteria which include biomarkers:
https://aaic.alz.org/diagnostic-criteria.asp

All super interesting developments!!

[Verbow]

This may be a stupid question but why would I want to have this test. I’m a 4/4 so I would think most likely not have good results. When I found out I was a 4/4 I was very stressed for a while but then came to terms with it and realized it was good to know so I could do the right things using a lot of the Bredeson protocol. I would feel that I would be wondering when my amyloid would create tau. Very curious about other peoples take on this subject.

I don’t think it’s a dumb question - it’s actually a really important question.

How will the test results be actionable assuming we’re already weighing our ApoE4 status into our lifestyle choices?

I don’t see how it can be helpful unless one needs a kick in the pants to make better choices.

[squirrel320]

This may be a stupid question but why would I want to have this test. I’m a 4/4 so I would think most likely not have good results. When I found out I was a 4/4 I was very stressed for a while but then came to terms with it and realized it was good to know so I could do the right things using a lot of the Bredeson protocol. I would feel that I would be wondering when my amyloid would create tau. Very curious about other peoples take on this subject.

I don’t think it’s a dumb question - it’s actually a really important question.

How will the test results be actionable assuming we’re already weighing our ApoE4 status into our lifestyle choices?

I don’t see how it can be helpful unless one needs a kick in the pants to make better choices.

For the why I would want to know ......I was very fortunate to have the benefit of multiple sessions with a genetic counsellor to discuss the pros and cons for me at various stages since 2020. Many individuals do not want to know and many do - it just depends how you are wired. I need no kick in the pants I have already had it: My aunt was diagnosed when she was 51, died at 66 of Alz and my mother first had noticeable symptoms at 68, was diagnosed at 72 and died of Alz at 75. They died within three months of each other in the last year. I am 55 and have tested positive on PrecivityAD2. I have concerns in respect of my executive function and memory but fortunately my amyloid PET did not meet the criteria of intermediate amyloid - the minimum required for the AHEAD 3-45 study. This information is highly important to me primarily for two reasons. First, it will assist me in deciding how willing I am to aggressively pursue treatments as they become available as compared to waiting for further refinements in drugs that will no doubt improve their safety and efficacy. Woo hoo - that there are drugs on the horizon. In the alternative, I have a career that is extremely demanding of my time. With my family history and depending where I am biologically in the biomarker progression, I may make different choices about how I use my time. Essentially, I believe these biomarkers allow individuals and their families to make decisions about their life and care, and may permit access to clinical trials for investigational therapeutics and drugs.

I wish my mother had known - she kept saying as it happened really quite quickly, this can't be happening to me. She was an extraordinary woman with an incredible career - she was an economist who was very senior in our foreign affairs department. I wish she had travelled more when she could (not that she didn't travel but she stuck to her budget). I also wish she had left me better instructions as to her care at each stage of the disease - but she didn't do either of those things. If she had known, I have no doubt she would have.

Hopefully that helps provide understanding of why some might see value in these tests and biomarkers. I fully respect that many, even those more determinant genes, like Huntington's or familial onset versions of Alz, may prefer not to know. The beauty of humankind - we are each unique.

[NF52]

This may be a stupid question but why would I want to have this test. I’m a 4/4 so I would think most likely not have good results. When I found out I was a 4/4 I was very stressed for a while but then came to terms with it and realized it was good to know so I could do the right things using a lot of the Bredeson protocol. I would feel that I would be wondering when my amyloid would create tau. Very curious about other peoples take on this subject.

I don’t think it’s a dumb question - it’s actually a really important question.

How will the test results be actionable assuming we’re already weighing our ApoE4 status into our lifestyle choices?

I don’t see how it can be helpful unless one needs a kick in the pants to make better choices.

Welcome, Verbow,

On behalf of the Support Team, I want to thank you for reassuring DDorans that not only are there "no stupid questions", but this particular question is a really interesting and maybe thorny one. As you both noted, it's no help to stress out about risks that may not come with actionable information.
The information may be actionable for different people in different ways:

• For those who need something to nudge them into steps they've been meaning to take, having a result of "intermediate risk" of amyloid plaques, for example, may be helpful. I know a woman who had an unhappy result on a coronary artery scan and lost quite a bit of weight and became an active cyclist and pickleball player and made many new social contacts. She's glad she learned the risk.

• For those who might decide to look into clinical trials for drugs that target prevention of amyloid alone with lifestyle, having this result may be something that will move them to seek out information on what is available near them and what their personal weighting of benefits and risks might be.

But even the researchers who developed these tests acknowledge that amyloid and p-tau are right now only early indicators of biomarkers associated with Alzheimer's and not a certain prediction. So having a plan in place and knowing that more info is not necessarily better is certainly a reasonable decision. I say that as someone who did learn I had elevated amyloid from a PET scan done at age 65 as part of a clinical trial and am now in the AHEAD-45 trial for people with that, with a 50/50 chance of being on a placebo infusion for 4 years.

Here are some other resources that may be helpful:
The Primer is written by Stavia, a practicing M.D. with ApoE4/4. It's a great place to see some strategies that you can consider--and she also recommends not trying to re-tool your entire life at once!

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics, and how to subscribe to topics of interest.

Thanks for sharing your views. Please continue to join the conversations; we need all voices!

Nancy

[Brian4]

BrainScan is a very exciting development!

On the website, I read:

"Unlike standard p-tau 217 tests, which do not turn positive until significant symptoms have occurred, high-sensitivity p-tau 217 by Neurocode is more sensitive."

Can Julie or anyone else point to evidence that this test is more sensitive than other p-tau 217 tests, for example that offered by LabCorp? –

https://www.labcorp.com/tests/484390/ph ... 217-plasma

At the LabCorp site, I read:

"This test is performed by Fujirebio Lumipulse chemiluminescent enzyme immunoassay (CLEIA). Values obtained with different methods cannot be used interchangeably. The validated limit of quantification is 0.06 pg/mL. Assay detection limit is 0.03 pg/mL."

I can't find detection limits at the Apollo website. Does anyone know what these limits are?

Thanks,
Brian

[Fiver]

Hi Brian. I was able to get a p-tau 217 test earlier this summer. It was part of helping the healthcare provider and doctors office here in my small town to see it was possible, and learn enough about it to offer it to the many others here who were interested. They did not know about the test and were unsure if they could order it, or understand the result well enough to explain it to patients. So we worked that out. In my case the result came back at zero. Even though I know it typically only detects current problems later in life (I am 53) that was nicely reassuring. More reassuring was knowing that I can periodically get some sort of indication of potential problems. It felt a bit like a clear coronary calcium score in that way.

It's funny that right away there is a better, more sensitive test. That feels like progress.

BTW I meant to report back about my test but have been waiting for the bill, so I could share the cost. I assumed my insurance would never cover it. But I haven't gotten one (yet). If I do I'll share the out of pocket price tag.

[Brian4]

Hi Fiver. Congratulations on the (literally!) perfect result on the p-tau 217 test!

It's funny that right away there is a better, more sensitive test. That feels like progress.

Actually, we can't know whether BRAINSCAN is better than the test you got until we compare detection limits. It could be the test you took is just as sensitive, in which case, your result is really great news!

Do you know which test you took? I'm guessing it was LabCorp's.

Best,
Brian

[squirrel320]

Hi Fiver. Congratulations on the (literally!) perfect result on the p-tau 217 test!

It's funny that right away there is a better, more sensitive test. That feels like progress.

Actually, we can't know whether BRAINSCAN is better than the test you got until we compare detection limits. It could be the test you took is just as sensitive, in which case, your result is really great news!

Do you know which test you took? I'm guessing it was LabCorp's.

Best,
Brian

Excellent news! I too had the p-Tau 217 and also the p-Tau 181 tests done (both were included in one package) and it was through the lab that Apollo Health is using. I am 55 and 4/4, and tested positive on the Precivity AD2 test last year as part of the AHEAD 3-45 trial, but my amyloid PET was below the 20 Centiloid threshold to be eligible to continue in the study - yay for that! However, given the positive PrecivityAD2, I wanted a better sense of was I in the 12+ range that is often considered that the train has already left the station so to speak and with the new p-Tau 217 recently approved in Canada decided to pursue that for clarification/reassurance.

Unfortunately, my results were not zero but were below what is considered elevated/MCI/Dementia range, another yay for that:
p-Tau 217 0.1 ng/L compared to a reference range of 0.34 ng/L and
p-Tau 181 of 31.38 ng/L vs reference range of 40 ng/L.

As the tests were done in Canada through regular diagnostic request, the interpretive report that Apollo Health will be providing is not available. If anyone does have insight to the reference ranges that are being used for pre-clinical and pre-symptomatic that would be greatly appreciated! Thank you!

[Fiver]

Hi Fiver. Congratulations on the (literally!) perfect result on the p-tau 217 test!

It's funny that right away there is a better, more sensitive test. That feels like progress.

Actually, we can't know whether BRAINSCAN is better than the test you got until we compare detection limits. It could be the test you took is just as sensitive, in which case, your result is really great news!

Do you know which test you took? I'm guessing it was LabCorp's.

Best,
Brian

Hi Brian. Yes, it was LabCorp's test. I figure a good result is good, but no assurance that it won't change.

[Brian4]

Fiver, yes, as I'm sure you know, in one's late 50s and early 60s the (statistical) risk of amyloid positivity starts going way up for ε4/ε4s (which you might not be), but even for plenty of heterozygotes.

I'm getting the LabCorp p-tau 217 test done next week. I just turned 61. I do not expect a result of 0, but I hope it's low....