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

Kathleen1
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Kathleen1 » Fri Apr 26, 2019 2:12 pm

"prevalence of dementia in APOE ε3ε4/ε4ε4 persons with high PBV values (>1 SD from mean) was observed to be the same as APOE ε3ε3 persons (14.3% versus 14.0%). "

Looks like I will eat mussels and egg yolks a little more frequently while waiting to find out if we can impact our own levels with diet, and if that makes a difference.

Bren1010
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Bren1010 » Fri Apr 26, 2019 4:03 pm

CoachMT wrote:
Azawakh1 wrote:Is it too late?

Welcome to the to the Apoe4.info community Azawakh! Great to hear you are interested in participating in the Biomarker study!

If you haven’t checked it out already, the primer, however if you haven’t yet, it’s a great place to learn about the resources available on this site. It was authored by a member physician who also carries two copies of the APOE-ε4 allele. It is regularly updated and provides information on the science behind the APOE-ε4 allele, tips on diet and lifestyle choices, biomarkers to check, and prevention strategies. Additionally, you may also be interested in checking out Our Stories to learn about fellow community members and to share with fellow members a little bit about your own story.

Welcome and please don’t hesitate to ask questions.
Best,
Mandy
Julie G wrote:Hi Friends! Over the past year, we’ve been collaborating with Prodrome Sciences and OpenCures on a project to advance APOE-ε4 science. ApoE4.Info members who choose to participate will receive quarterly reports of levels of hundreds of metabolites, proteins, and standard clinical biomarkers to help us refine our personal health strategies. Our anonymized data will inform the development of prevention and treatment strategies for all ε4 carriers and comprise an open access database available to all researchers.

The testing will be extraordinarily detailed and will provide information measured and used by scientists but not yet clinically available at any price. At a cellular level, what is happening in our bodies? Does the latest research associate our metabolomic profiles with vibrant health and longevity or with chronic disease and increased mortality? As we adapt strategies to mitigate the effect of our APOE-ε4 status, what happens to our metabolomes? Do specific strategies help or hurt? We will be able to conduct our own N=1 personal experiments, to discuss and share our experiences with others, and to access the anonymized data of all participants.

Metabolomic links to specific diseases is a hot research topic, and we will receive results that help us evaluate and potentially alter our own prospects for Alzheimer’s, heart disease, colorectal cancer, pancreatic cancer, and overall longevity.

Optionally, each participant will be able to try a new supplement designed to boost a key family of the measured metabolites. You can learn more about the links among plasmalogen levels, Alzheimer’s risk, and APOE-ε4 status from the slide deck attached to the first post of this topic.

Full details including testing scope, report samples, and costs are still being developed. The metabolomic testing will be donated by Prodrome Sciences, and we will enjoy favorable pricing for the standard clinical tests. Currently our convenient in-home phlebotomy solution accounts for most of the expense. We are exploring options to allow individual participants to reduce the cost, which we expect to come in above $50 and below $125 monthly over the minimum two year participation period.

What you will need to provide:

    -Quarterly blood draws with a phlebotomist coming to your home or to a central location near you.
    -Quarterly anthropometric data including height, weight, blood pressure
    -Quarterly online cognitive testing
    -Quarterly reporting of your lifestyle strategies, diet details, and supplements
Participation will not be limited to ε4 carriers. We are especially interested in including non-ε4 family members. 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.

To weigh in, please respond to the poll above in this topic.

I am interested in the study I am new to this site and not sure if I am posting in the right place.

sarahb12
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby sarahb12 » Tue Apr 30, 2019 7:38 pm

I'm in, if possible
E3/E4

Triple7s
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Triple7s » Tue Apr 30, 2019 8:32 pm

I'm in as well.
E4/E4

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

Postby Rainbow » Tue Apr 30, 2019 9:16 pm

Sounds like a fantastic opportunity! Thanks for putting this out there. If available near me, I'm 100% in. Hope everything goes smoothly with the NIH grant.
4/4

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

Postby CarrieS » Wed May 01, 2019 10:33 am

Triple7s wrote:I'm in as well.
E4/E4


Good morning Triple7s and Welcome!
The poll (now closed) was a way to see if there was interest to participate within the membership. The good news is that the study has not started and there will be opportunity for those who wish to participate. A good way to keep up on this would be to follow this forum by scrolling down to Post Reply. To the right is an icon that looks like a "wrench", click on that and then click on Subscribe Topic.
You'll get a notification when a new post to the topic is posted.
Carrie
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Certificate for Reversing Cognitive Decline for Coaches (FMCA)
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DebS
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby DebS » Wed May 01, 2019 5:03 pm

Triple7s wrote:I'm in as well.
E4/E4


Hello and welcome Triple7s! If you would like to learn how to quote when you reply so that the person to whom you are replying is notified, and other cool tricks, you might be interested in our "How-to" guide. When you are ready, please tell us more about yourself in the Our Stories forum. We are here to help, so please feel free to reach out if you have questions. I look forward to seeing more of your posts!
Deb
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National Board Certified Health and Wellness Coach
Certified Reversing Cognitive Decline

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

Postby Suzp » Wed May 01, 2019 9:48 pm

I would very much like to participate in the Biomarker Study if still possible. I am an ApoE4 carrier and new to the group.

thanks,

Suzanne

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

Postby CoachMT » Fri May 03, 2019 6:43 am

Suzp wrote:I would very much like to participate in the Biomarker Study if still possible. I am an ApoE4 carrier and new to the group.

thanks,
Suzanne


Welcome to the ApoE4.info community Suzanne! It’s great to have you join this active and supportive community! Terrific to hear that you are interested in participating in the Biomarker study!

If you haven’t seen it already, the primer is a great place to learn about the resources available on the ApoE4.info site that you may want to incorporate into your own learning journey. It was authored by a member physician who also carries two copies of the APOE-ε4 allele. The primer is regularly updated and provides information on the science behind the APOE-ε4 allele, tips on diet and lifestyle choices, biomarkers to check, and prevention strategies.

You may also be interested in checking out Our Stories forum to learn about community members embarking on the same journey. Feel free to post questions and share about your journey. Welcome!
Best,
Mandy
-Certificate for Reversing Cognitive Decline (FMCA)
-Functional Medicine Certified Health Coach (FMCHC)
-National Board Certified- Health and Wellness Coach (NBC-HWC)

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

Postby Laddvan » Sun May 05, 2019 11:58 am

Hi Julie. I'm new to the site, and missed the poll. Is there any update on the biomarker study? I recently learned of my 4/4 status and have found this site to be a wonderful resource. Thank you.


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