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

NF52
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sat Mar 07, 2020 6:19 am

viaswiss wrote:You have to pay monthly to be in this study?
I think it was anticipated that the study might be of people who were choosing to follow a recommended protocol, and thus would be choosing to pay for that, with the indirect support of the study. However, this post was primarily seeking to gauge interest in such a study and has not yet been started.
4/4 and still an optimist!

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

Postby ggouty » Sun Mar 15, 2020 7:49 am

Hi I would be interested in the study, depending on cost. I am a 3/4 and my son is a 4/4. Just recently had lipid biomarkers that made my MD very concerned. I do have limited funds now but would be interested if I could work it out.

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

Postby ggouty » Sun Mar 15, 2020 3:25 pm

I might be interested in following a protocol because at this point I don’t know what I am doing with myself. My doctor has requested no dairy, no gluten, no eggs, no meat. I feel I am already eating well with no gluten, very little dairy, no junk, very low sugar, time restricted feeding, no seed oils, etc. The doctor has gotten me very discouraged with her recommendations.

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

Postby MicheleCC » Sun Mar 15, 2020 3:39 pm

ggouty wrote:Hi I would be interested in the study, depending on cost. I am a 3/4 and my son is a 4/4. Just recently had lipid biomarkers that made my MD very concerned. I do have limited funds now but would be interested if I could work it out.


Hi ggouty, I'm glad you found us here at ApoE4.Info! Your interest in the biomarkers study is noted and you will be notified when the study is initiated. Until then, you're in the right place! The apoe4.info website offers a supportive community of people who share your apoe4 related concerns, as well as valuable information.

A good place to start is the Primer. Written by Stavia (an MD), the Primer is an excellent overview of the ApoE4 gene and its associated risks. To learn more specifically about cholesterol and other blood lipids, you can search the site by clicking on the magnifying glass icon located to the left of you user name. Enter a word or phrase in the search bar and it will bring up all posts containing your search topic. Our Wiki is a great place to browse for information as well. Other tools for navigating the site can be found at How To Get the Most out of the ApoE4.info website.

Users of the site get to know each other and are able to support one another by sharing a little about themselves on the Our Stories thread of the forum.

Please know that your genes are not your destiny. There is a lot that can be done to optimize your health and we are learning more and more every day! Please let us know how we can help you find what you're looking for here on the apoe4.info website.

Warm regards,
MicheleCC
Functional Medicine Certified Health Coach
Certified Nutrition Educator & Consultant
Board Certified in Holistic Nutrition (NANP)

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

Postby MicheleCC » Sun Mar 15, 2020 4:07 pm

ggouty wrote:I might be interested in following a protocol because at this point I don’t know what I am doing with myself. My doctor has requested no dairy, no gluten, no eggs, no meat. I feel I am already eating well with no gluten, very little dairy, no junk, very low sugar, time restricted feeding, no seed oils, etc. The doctor has gotten me very discouraged with her recommendations.


You're not alone in feeling discouraged or overwhelmed by suggested dietary changes. There's a lot of information to sort through and so many things to try. The reward comes from discovering what works specifically for you. Are you working with anyone to help you break down your doctor's recommendations into manageable pieces where you can see what's working and what isn't?

If you feel working with a Health Coach is something you would like to do, here is a link to our list of apoe4-aware Health Coaches. You may also gain helpful insight by reading through the website and seeing what others are doing to manage their diet, blood lipids, etc.

What specific information do you feel you need at this time that might help bring clarity or direction to your situation?

Warm regards,
MicheleCC
Functional Medicine Certified Health Coach
Certified Nutrition Educator & Consultant
Board Certified in Holistic Nutrition (NANP)

NF52
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Mar 15, 2020 5:55 pm

ggouty wrote:Hi I would be interested in the study, depending on cost. I am a 3/4 and my son is a 4/4. Just recently had lipid biomarkers that made my MD very concerned. I do have limited funds now but would be interested if I could work it out.
Welcome! I just wanted to add to Michele's warm and informative welcome that this topic started in March of 2018 to determine interest among forum members in a possible trial, but that study does not appear to be happening anytime soon.

The good news is that, as Michele pointed out, we have many forum members who have experience with figuring out how to respond to similarly-concerning biomarkers and develop their own plan of action. Because your son is a 4/4, his other parent must also have a copy of ApoE 4. Together, you can consider how to live lives full of purpose, understanding that research into ApoE4 is expanding greatly, and the means to manage risk is likely to be much better understood in the near future.

Depending on what age you are, you may want to consider other, free studies for participation. Some 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 ggouty » Sun Mar 15, 2020 7:19 pm

I think I have trust issues honestly. I no longer know what is good advice. I have read and followed Dr Bredesen’s book to the best of my ability. I probably have been eating too much meat since he says it should be treated as a condiment. My blood lipids don’t look great but I am not even sure I should be concerned about them. I refuse a statin but this doctor wants me to take Red Yeast Rice now. Already she has me taking a ton of expensive supplements and I am suspecting she is getting a kick back from the supplement companies. She is a Functional Medicine Practitioner. I was just expecting more. I will begin to read here and see what I can learn. I may check out the health coach. Thank you.

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

Postby MicheleCC » Sun Mar 15, 2020 10:19 pm

ggouty wrote:I think I have trust issues honestly. I no longer know what is good advice.


You’re not alone. Functional Medicine can be tremendously helpful, but there are challenges with how providers deliver the sometimes complex treatment plans. Often, a great deal of education and personalization needs to go with it to make it effective. It sounds like you’ve followed your doctor’s recommendations, but perhaps it hasn't been tweaked to meet your specific needs or given it enough time?

Its hard to say without knowing more about you, but sometimes people need to resolve issues in other bodily systems, such as digestion, before they'll see results with their cholesterol.

It sounds like you’ve already done a good bit of self educating and implementing dietary interventions. Members of the apoe4.info website learn a lot from each other by sharing their stories, what has worked for them and what hasn’t. As you browse the site, You may find you see yourself in other members stories and gain insight and inspiration that way.

There is a path forward for you. I encourage you to keep asking questions. There are many here who continue to live happy, healthy, joy-filled lives regardless of their ApoE4 status, and sometimes because of it!

MicheleCC
Functional Medicine Certified Health Coach
Certified Nutrition Educator & Consultant
Board Certified in Holistic Nutrition (NANP)

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

Postby alznomore » Thu May 14, 2020 5:48 am

I would be interested in participating in the study as well as my husband and three daughters. We are all APOE4/4s.
Thanks,
Alznomore

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

Postby RAJ64 » Thu May 14, 2020 11:43 am

alznomore wrote:I would be interested in participating in the study as well as my husband and three daughters. We are all APOE4/4s.

Welcome to the ApoE4.info community, alznomore! I see that the ApoE4 gene is prevalent in your family. It may help to keep in mind that while ApoE4 increases risk of late onset AD and some cardiovascular conditions, it is a measure of risk. There is quite a lot you can do to reduce your risk that is lifestyle related. Genes are not our destiny!

As this is your first post, I would like to share a few helpful links in case you haven't yet discovered them:

The ApoE4 Primer, written by an ApoE4 positive physician in our community, is a great place to start learning about the ApoE4 carrier's genetic risk. Primer

I thought it might be helpful to share a "How-To" guide for new and not-so-new members. It includes screenshots and step-by-step directions for such useful actions as posting on the site, using quotes to notify members of a response to their post, using hyperlinks to articles or other forum topics, subscribing to a favorite topic, and using Private Messages. How To Get The Most Out Of The ApoE4.Info Website

Thank you for your interest in the biomarker study referenced in this thread. One of our members who is familiar with this topic had this information to share on March 7, 2020:
NF52 wrote:...this post was primarily seeking to gauge interest in such a study and has not yet been started.

While the biomarker study this thread was referring to has not been started yet, there is quite a bit of information about biomarkers available in the Primer mentioned above and the Wiki section here: Biomarkers

For more information on clinical trials and studies that might be of interest to you, please refer to NF52's post which is here: May 15, 2020 Other Studies of Interest

A forum can be a confusing place to find information on a specific topic. Using the Search function helps you find previous conversations or threads on topics that interest you. We encourage people to post to previous topics, even if they haven't been active for a while. It gets conversations going and often promotes new ways of looking at an issue.

In addition, you can search for a specific thread topic by clicking on the magnifying glass icon in the upper right corner of the menu bar at the top of the page. How To Search the ApoE4 Site

You are always welcome to post questions and share your experience. We would also love to know what lead you to our community so please feel free to introduce yourself on the Our Stories Forum if this is something you would enjoy doing. We look forward to your participation in the ApoE4.info community, alznomore!

Warmly,
Rachel
RAJ64, BSN, RN
ApoE4.info Intern
Functional Medicine Certified Health Coach
With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt


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