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 » Sun May 05, 2019 1:10 pm

Laddvan wrote: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.
Welcome, Julie! I see that TheresaB, a Moderator and source of deep wisdom on many ApoE-4 related topics, has already given you suggestions on a ketone meter.

So I'll jump in with reassurance that you haven't missed the study, which is still in the development stage. The poll was seeking interest in a study, so those who responded are not committed to joining any eventual study, and those who did not respond have not missed the opportunity.

You mentioned in your other post that you are ApoE 4/4 and still adjusting to that. Welcome to the club of people who learn more than they ever thought they would need to about ApoE 4! You also say that you are "asymptomatic", which is great! At 67, I can thankfully say that also, and know of people on this site in the 70's and 80's with ApoE 4/4 who can say the same. So as you search for information, be sure not to believe everything you read! Some articles that were written more than 20 years ago about small populations in memory care clinics are still being cited today as if they are applicable to populations that are far more diverse and are not making appointments with a memory center!

If you are between the ages of 55-75, you may be eligible and interested in clinical studies, which include "observational" ones, which measure various biomarkers and/or cognitive areas over time and "interventional", which study responses between a control group which has a placebo or no intervention and a randomly assigned group may have a dietary or exercise intervention or a preventative study drug. Here are some resources for information on how clinical trials work and how to find them:

Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health

Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)

GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.

We look forward to having you post on many forums to share your insights and experiences!
4/4 and still an optimist!

Eileen53
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Eileen53 » Tue May 14, 2019 9:07 am

Would love to be part of this study. I’m ApoE4/4, aged 65 and live in the UK.

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

Postby Davida » Tue May 14, 2019 2:11 pm

Eileen53 wrote:Would love to be part of this study. I’m ApoE4/4, aged 65 and live in the UK.


Hi Eileen53, and welcome to the Apoe4 community.

Thanks for your interest in the Biomarker Study. Stay tuned for updates, it doesn't look like you missed the opportunity. Since you are a new user you might like to take a look at our Primer written by a physician member. It's a wealth of information on the Apoe4 gene as well as prevention strategies. Also, you may find Wiki useful for more in-depth discussions on topics of interest to you specifically. And when and if you desire, Our Stories is a wonderful spot to share more of yourself.

Please don't hesitate to ask question or chime in at anytime.

Again, Welcome.

Davida
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Eileen53
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Eileen53 » Wed May 15, 2019 5:21 am

Thank you Davida, I have begun to explore the site.

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

Postby Julie G » Fri May 24, 2019 2:27 pm

Hi Friends! In a new YouTube video, Dr. Goodenow explains his most recent paper. To refresh your memory, see the paper below:

Relation of Serum Plasmalogens and APOE Genotype to Cognition and Dementia in Older Persons in
a Cross-Sectional Study/b]
Abstract: Using a community sample of 1205 elderly persons, we investigated the associations and potential interactions between Apolipoprotein E (APOE) genotype and serum phosphatidylethanolamine (PlsEtn) on cognition and dementia. For each person, APOE genotype, PlsEtn Biosynthesis value (PBV, the combination of three key PlsEtn species), cognition (the combination of five specific cognitive domains), and diagnosis of dementia was determined. APOE genotype and PBV were observed to be non-interacting (p > 0.05) and independently associated with cognition: APOE (relative to ε3ε3:ε2ε3 (Coef = 0.14, p = 4.2 × 10−2); ε3ε4/ε4ε4 (Coef = −0.22, p = 6.2 × 10−5); PBV (Coef = 0.12, p = 1.7 × 10−7) and dementia: APOE (relative to ε3ε3:ε2ε3 (Odds Ratio OR = 0.44, p = 3.0 × 10−2); ε3ε4/ε4ε4 (OR = 2.1, p = 2.2 × 10−4)); PBV (OR = 0.61, p = 3.3 × 10−6). Associations are expressed per standard deviation (SD) and adjusted for serum lipids and demographics. Due to the independent and non-interacting nature of the APOE and PBV associations, the 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%). Similarly, the prevalence of dementia in APOE ε3ε3 persons with high PBV values was only 5.7% versus 6.7% for APOE ε2ε3 persons. [b]The results of these analyses indicate that the net effect of APOE genotype on cognition and the prevalence of dementia is dependent upon the plasmalogen status of the person.

goodenowe_2019_relation of serum plasmalogens and apoe to cognition and dementia.pdf
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Berri
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Berri » Fri May 31, 2019 7:55 pm

Hi, I see I am too late for the poll. Would I still be able to participate when this study does happen?

Thanks, Berri

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

Postby healthwriter » Fri May 31, 2019 8:48 pm

I am interested. The poll closed before I read about this project.

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

Postby Julie G » Sat Jun 01, 2019 7:09 am

Once again, this was just a poll to gauge interest. When and if we get the study up and running, everyone who is interested will be invited to join.

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

Postby SamNZ » Sun Jun 02, 2019 5:04 pm

healthwriter wrote:I am interested. The poll closed before I read about this project.

Hi healthwriter,
welcome to our community, I hope you are familiar with the site, a great place to start if you are not so familiar with info on the APoe4 gene is the Primer linked here. We would love to hear more about your journey. SamNZ
Samantha McBride
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Mon Jun 03, 2019 5:32 am

healthwriter wrote:I am interested. The poll closed before I read about this project.
Welcome, healthwriter!

It sounds like you spend your days (and probably nights, since I have a son who works in the writing field) interested in your own health and others. If so, you have found a community that has many people who personally and sometimes professionally have immersed themselves in learning about diverse topics related to ApoE4 and its effects on health.

As SamNZ has noted, the Primer, written by a physician member with ApoE 4/4, is a great resource which indicates the areas of settled science (we are not all Neanderthals!) and the many areas of rapidly developing and hotly contested knowledge. In addition, we have a Wiki curated by members with deep dives into specific topics of high interest as well as resources such as "How-To" Get the most out of the ApoE4.info website
. I recommend that for an early visit, since it shows how to quote members so they see your post, how to subscribe to forums of interest and how to search for topics.

New members often are relieved to share their own stories and questions on Our Stories. We hope you find this a site that is a good resource for your own questions.
4/4 and still an optimist!


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