URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Including yourself, how many people from your family do you think are likely to enroll?

Poll ended at Fri Apr 05, 2019 5:52 am

0
2
2%
1
81
68%
2
28
24%
3
8
7%
4
0
No votes
 
Total votes: 119

Tincup
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Tincup » Mon Jun 08, 2020 3:14 pm

floramaria wrote:
healing wrote:Has testing for Biomarker Study begun?

Interested.

Healing~Here is direct quote from the response given by RAJ64 in a post a few above your first post:
To answer your question about participating in the Biomarker study, my understanding is that this thread was started to poll our group for interest in participating in a study that hasn't yet begun. Perhaps others can weigh in on the criteria of the study and let us know if it was being planned for residents of a particular country.

Here is a quote from Julie G. snipped from the original post on March 31, 2019:

"The project is not imminent; however, we do need a preliminary assessment of member interest for an NIH grant application that is due soon. Grant funds could reduce member cost, enrich the information we receive, or both."

Many of your questions about the study may be answered by reading the posts in this thread, especially the first post, by JulieG.


The NIH grant did not happen. We also thought we were going to get a large donation that would have kicked this off. This fell through. The team is still working on making this study happen. I'm not on the team, so can't give the most recent info.
Tincup
E3,E4

healing
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby healing » Mon Jun 08, 2020 3:48 pm

good!

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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Tue Jun 09, 2020 5:51 pm

healing wrote:...Website overwhelms me. Cannot find where things are yet.

Study biomarker study - when does it start? Somehow interested in getting on board with this study.

heaing
Hi Healing,

Our website is overwhelming, isn't it! One of the issues with a forum is that it's like keeping track of 1000's of conversations--or trying to look through notes for a talk and figuring out where to begin! Here's a link to our How to Get the Most out of the ApoE4,info Website. It is designed to make it easier (we hope!) to find information.

Having experienced moments of "brain fog" myself when in front of groups, often it is the setting that triggers this. New people, anxiety about expectations, lack of sleep, etc. make your brain lose focus much more easily. You would not beat yourself up if you got lost driving in a new city, so give yourself permission to be like actors who sometimes forget their lines.

Since you are interested in the biomarker study, I thought I'd share information on some other options. Many researchers are eager to partner with people who can help advance our ability to prevent and reduce the risk of cognitive impairment. I have been in a clinical trial myself that lasted 2 years, and recently participated in a brief (one telephone call) mini-study.

The terms "clinical study" and "clinical trials" are often used to refer to some kind of study of a treatment or intervention, which can include something like a specific diet, or an increase in exercise, or techniques to change or improve our thinking and memory skills. Some study how a drug compares to a placebo.
Others are "observational" trials, looking at online or in-person data from thousands of people to learn more about healthy aging and better identify which indicators of change may be most important to track. Some of those may share information with participants; others may share some, but not all. More and more, study sponsors are realizing that people want to be active participants and gain as much information as possible while participating in a trial, so expect to find more, rather than less information as new trials begin.

Here are some that might be of interest to you:

The All of Us Research Program is sponsored by the National Institute of Health: All of Us is
inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This could help them develop better treatments and ways to prevent different diseases.

The Alzheimer's Association spends millions each year to support research on prevention and treatment of AD, and has a Trial Match of studies that include non-drug trials. You can read more here:
Trial Match

The Alzheimer's Clinical Trial Consortium (ACTC) is a network of dozens of academic research centers collaborating to accelerate research, with funding from the National Institute on Aging (NIA/NIH). They have an online Alzheimer's Prevention Trial web study called for people who are 50 years or older. You can find information about it here: APT Webstudy Welcome (Full disclosure: I am on the Research Participant Advisory Board for the ACTC, although I am not in any ACTC-sponsored clinical trial.)

To search for clinical trials (large and small) by your region, try the advanced search function on the NIH Clinical Trials website. Each trial has detailed information about its purpose, the criteria to join and contacts for study sites. Clinical Trials.gov

Enjoy learning more about clinical trials and thank you again for joining our community!
4/4 and still an optimist!

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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Ljflynn47 » Sat Jul 25, 2020 8:52 am

If it’s not too late - I would very much like to be included. Many thanks.

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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Jul 26, 2020 9:20 am

Ljflynn47 wrote:If it’s not too late - I would very much like to be included. Many thanks.
Hi Ljflynn47!

I hope you're enjoying the sometimes-crazy process of browsing around this forum. Even people who use it a lot often call it "drinking from a fire hose".

The "title" of this topic is a bit confusing since the study went in a different direction, I believe, with functional medicine doctors working together in a few places to study some of their patients. I know you were planning to talk to your doctor about all of this; you may want to bring the list of some of the Biomarkers from the Primer written by Dr. Stavia if you have questions about your current (or "baseline") levels on some of those blood tests.

You may be interested in some other free online studies which are seeking to include tens of thousands of people like you and me in long-term, online study of our healthy brains:
The All of Us Research Program is sponsored by the National Institute of Health: All of Us is
inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This could help them develop better treatments and ways to prevent different diseases.

The Alzheimer's Clinical Trial Consortium (ACTC) is a network of dozens of academic research centers collaborating to accelerate research, with funding from the National Institute on Aging (NIA/NIH). They have an online Alzheimer's Prevention Trial web study called for people who are 50 years or older. You can find information about it here: APT Webstudy Welcome (Full disclosure: I am on the Research Participant Advisory Board for the ACTC, although I am not in any ACTC-sponsored clinical trial.)

Your interest in participating in a study suggests that you have one of the traits observed in people whose brains continue to work well: Optimism and openness to new ideas. Here's a study whose conclusions I like:
The ability to generate vivid mental imagery of positive future events may provide a modifiable cognitive marker of optimism. Boosting positive future imagery could provide a cognitive target for treatment innovations to promote optimism, with implications for mental health and even physical well-being.
Optimism and mental imagery: A possible cognitive marker to promote well-being?

Keep posting and keep us posted on how you are doing!
4/4 and still an optimist!

Ljflynn47
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Ljflynn47 » Mon Jul 27, 2020 6:14 pm

Hello NF52.

What a kind and generous response. Thank you! I’ll dive into some of this. I am indeed drinking from the fire-hose and keep going down different rabbit holes and needing to find my way back. I’m still not all the way through the primer as a result... but what a gift that is. Huge thanks to Stavia!

I spoke with my doctor who seemed, initially, onboard with helping me navigate through some of this. I sent her Dale Bredesen’s book so she could see the cognoscopy list and suspect she has gotten daunted. She mentioned another of her patients is working with a functional medicine doctor and suggested I reach out, so I did. The responding email was a list of charges, including $2250 for an initial consult and up to $5000 for labs and supplements plus plus. It was jarring. So - two things for comments or advice, please (from you or others):

1. Is this typical and should I expect that any engagement with a physician in this space is “no insurance” and lots of out-of-pocket including the implication that I buy their supplements (which I’m assuming, rightly or wrongly, are on the pricier side)? If this is the norm I’ll figure it out but I don’t want to be taken advantage of either.
2. This seems to suggest that only those that can afford hefty bills have a chance at beating this monster back, which feels fundamentally wrong. Are you aware of any actions being taken to address this? Lobbying insurance companies, etc.?

Thanks again - and I hope my questions don’t aggravate. I was just seriously caught off guard.
-L

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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Tue Jul 28, 2020 5:38 pm

Ljflynn47 wrote:...I spoke with my doctor who seemed, initially, onboard with helping me navigate through some of this. I sent her Dale Bredesen’s book so she could see the cognoscopy list and suspect she has gotten daunted. She mentioned another of her patients is working with a functional medicine doctor and suggested I reach out, so I did. The responding email was a list of charges, including $2250 for an initial consult and up to $5000 for labs and supplements plus plus. It was jarring. So - two things for comments or advice, please (from you or others):

1. Is this typical and should I expect that any engagement with a physician in this space is “no insurance” and lots of out-of-pocket including the implication that I buy their supplements (which I’m assuming, rightly or wrongly, are on the pricier side)? If this is the norm I’ll figure it out but I don’t want to be taken advantage of either.
2. This seems to suggest that only those that can afford hefty bills have a chance at beating this monster back, which feels fundamentally wrong. Are you aware of any actions being taken to address this? Lobbying insurance companies, etc.?

Thanks again - and I hope my questions don’t aggravate. I was just seriously caught off guard.L
Hi "L",

Don't ever worry about "aggravating" us with questions! Posing questions, including ones that make people uncomfortable at times, is how lots of new ideas become considered, tested and developed. I'll try to answer your questions, with the provision that "it depends" is always on the list of correct answers.

1. Many large metropolitan areas have multiple doctors who have received training in "functional medicine" or "integrative medicine". Here's some tips on how to find one from our Wiki Searching for a Healthcare Practitioner
. This is a list of practitioners who have been recommended by forum members, or who have requested to have their information included on our forum: ApoE4-Aware Healthcare Practitioners Dr. Lisa Mosconi, who directs the Women's Health Initiative at Cornell-Weill Medical Center in NYC recently published a book on "The XX Brain" focused on cognitive health and the effects of menopause on women's brains. (I have only started it, so this isn't an endorsement to buy it.)

Generally, FM doctors see fewer patients each day and devote much more time to each patient, and often a team approach of other professionals in their practice. Insurance generally does not cover that time, hence the cost to the patient. Some FM doctors will work with your insurance company to bill for what will be covered. Not all FM doctors sell their own supplements and you would be under no obligation to buy their supplements. (We have some forum topics on how to determine good quality supplements.)
Some people choose to use FM doctors at the beginning of their journey to guide the route; others feel that their needs require consistent and in-depth monitoring. (I know someone who traveled around the world on her own and never had a problem. But if I ever travel to a country without knowing its customs, language or culture, I will hire a skilled guide! )

A "guide" for some others is a certified health coach who is trained in functional medicine and aware of ApoE4. (You can find a list of some of those people here: ApoE4-Aware Health Coaches

2. I would never endorse the idea that only those who can afford hefty bills can avoid Alzheimer's--if that's true, then I'm in big trouble at 68, since I don't use an FM doctor! Instead, I use direct-to-consumer lab tests Direct to Consumer Lab Testing Options,the forum, and my own deep dives to decide what I need to focus on and how to maintain a sense of control.
Just today, I saw a talk at the Alzheimer's Association International Conference noting that there are people in their 90's with both amyloid plaques and tau tangles who have normal synapses (connections) in their neurons and normal cognition when they die.
Researchers are working hard to find out exactly what is most important to reaching that goal, but one strong suspicion is good vascular health (normal blood pressure, good coronary health) and low inflammation in the brain. One study suggests that getting a flu and pneumonia vaccine may protect against AD, because it boosts the brains immune system! A major study called the POINTER study (based on earlier studies in Finland and Europe) is examining whether exercise, a Mediterranean style diet (the MIND diet), cognitive stimulation, and social engagement can reduce dementia. The earlier study in Finland and one called SPRINT-MIND here showed up to 1/3 of dementia cases might be prevented with those measures (and avoiding serious or repetitive head injuries.)

I hope this is a start in answering your questions!
4/4 and still an optimist!


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