Alzheimer's Prevention Clinical Trials

[gallagherde]

After reading a review of your recent meetup, I noticed one thing lacking; nothing was mentioned about the current research in PREVENTION. There are a few clinical trials going on right now that are targeting APOE4 carriers, which you all most likely are.

These studies would be perfect for someone who is APOE4/4 or a carrier, and wants to try anything to stop or delay the onset of the disease. While many drugs on the market are not seeing results, these prevention studies may be the answer.

Here are two links the the studies:

https://clinicaltrials.gov/ct2/show/NCT ... ase&rank=2

https://clinicaltrials.gov/ct2/show/NCT ... ase&rank=1

[Julie G]

Welcome, gallagherde! I'm guessing that you're referring to the STAT News story? As I mentioned in the comments, that was one journalist's perspective after interviewing a handful of members; hardly the width and breath of our work here. A quick site search reveals over 60 hits discussing the Generation Study. Here is one of the more active threads involving folks who are directly participating. As you're likely aware, to be included, one must be 4/4 and 60-75 years of age. Not all of us qualify... and, frankly, not all would want to participate if they did. As a group, we follow many different strategies and paths towards wellness and respect one another's decisions. IMHO, a combo of Pharma & lifestyle will likely prove most effective at addressing Alzheimer's. I'm personally open to anything that will extend my useful life . Thanks for sharing!

[tomjef]

Background to question: I am a 69 year old asymptomatic (I think) 4/4 male. I only recently found out I was 4/4 via 23 and me, and thus have not really had much time to experiment with diet etc, although I think I have a reasonable diet. My self sense of cognition seems fine, although my brain seems to work a little slower. Interestingly, with regard to Bredesen theories, I have had and am being treated for low testosterone and low thyroid, with Vit D also low. My only concern re other implicating factors are way too many anesthesias to fix a variety of broken bones.

Here's the question with regard to clinical trials, or at least research.

It seems like someone would be interested in individuals who are 3/4 and 4/4, not necessarily to determine what single intervention or drug might result in improvements in cognitive decline (as per Bredesen, I believe single interventions are unlikely and perhaps perverse to find a "cure"), but to determine what are the characteristics of asymptomatic individuals (for 4/4s, we "only" have a lifetime risk of about 50%), to assess and follow over time, as to what markers if any change as one progresses from asymptomatic to subjective cognitive impairment top mild cognitive impairment to Alzherimers. And, of course, to determine the characteristics of the 50% who don't get AD. Seems like that would be valuable.

Anyone on the forum know of such a longitudinal study going on, or planned? I am significantly interested in participating in such research, but most of the trials seem to be pharmaceutical company research.

Thanks

[AKA]

I like your idea tomjef. I would participate in such a study.
aka

[slacker]

It seems like someone would be interested in individuals who are 3/4 and 4/4, not necessarily to determine what single intervention or drug might result in improvements in cognitive decline (as per Bredesen, I believe single interventions are unlikely and perhaps perverse to find a "cure"), but to determine what are the characteristics of asymptomatic individuals (for 4/4s, we "only" have a lifetime risk of about 50%), to assess and follow over time, as to what markers if any change as one progresses from asymptomatic to subjective cognitive impairment top mild cognitive impairment to Alzherimers. And, of course, to determine the characteristics of the 50% who don't get AD. Seems like that would be valuable.

Anyone on the forum know of such a longitudinal study going on, or planned? I am significantly interested in participating in such research, but most of the trials seem to be pharmaceutical company research.

Thanks

You may want to check out Brain Health Registry; they basically gather information and follow remotely over time.

http://www.brainhealthregistry.org/how-it-works

I participated (from home) in a smell test, looking at linking diminished smell with cognitive decline over time. As a participant, I don't get results from my study but in a small way am contributing to science.

[KatieS]

Every six months, the Brain Registry sends me an on-line brief battery of cognitive tests to complete. Although, I don't receive results, I try to note how I felt completing the photo memory tests (easy), cards ( improved greatly since initially I was not a card player), and recalling the dots to redraw lines (still miss a few if over 5 dots for me).Also, they update your general history, mood, or any complaints.
It is easy to sign up for the Brain Registry.

Also, I've been in the Nurse's Study for over three decades and they now send me cognitive card tests, not as comprehensive testing as above.

These studies should provide good longitudinal data.

[AKA]

Thank you for the info and link KatieS!