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

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

Post by Renorap »

It appear that I am a little late to participate in this study. I have known about my apoe 4/4 since 2008. I have been taking supplements since I was in my 20's and have take many supplements based on my own research. I am currently reading the latest Bredesen book on the program. Thinking about taking the blood tests and starting the program. I am 74 and just doing great having retired from the SFPD and still an active member of the State Bar.
Trailrunner
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by Trailrunner »

Hi Julie,
I would also love to participate in the Biomarker Study. It would only be me participating.

Thank you,
Helen
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by NF52 »

Trailrunner wrote:Hi Julie,
I would also love to participate in the Biomarker Study. It would only be me participating.

Thank you,
Helen
Hello again, Helen!

Thank you for your interest in participating in this study. As it turns out, this survey of interest in a study got lots of interest. It became a study involving a few doctors using the Bredesen protocol with their patients, and I think the results may be available later this year.

As someone who, like you, is also ApoE 4/4 and has participated in a clinical study and knows several women who have also done so, you may want to consider other 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 data. 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

And since I know you've been eager to join the NorCal meet-ups, and mentioned that you live in Santa Clara, I hope that the fires in your area are getting under control and the risk to life and property is receding. When my husband has to text a family member in your area to find out how close the evacuation orders are, it's scary!
4/4 and still an optimist!
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by mKm »

Love to participate. I am in the Seattle area and have easy access for blood draws. I’m willing to come to SF for any items that must be done there.
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by NF52 »

mKm wrote:Love to participate. I am in the Seattle area and have easy access for blood draws. I’m willing to come to SF for any items that must be done there.
Welcome, mKm, from someone who found it very worthwhile to participate in the Generations Study from 2017-2019, a clinical trial for healthy people with ApoE 4. I'd be glad to answer any questions you have about the process of finding and screening for clinical trials.

Unfortunately, the study referenced in the title of this post is no longer open. If you check my post right above yours, you'll see several highlighted links for online registries that are recruiting healthy people interested in clinical trials. Many simply ask people to sign onto a Registry, so that you can receive notifications of trials in your area. Some ask you to participate in online testing every few months, and your results are shared with you.

Also, Seattle has a nationally recognized research center at Harborview Medical Center.
One of our members, "Rainy", has posted about participating in several short brief studies. Here's an excerpt from her:
[quote="Rainy""] Thanks also to everyone for expressing interest in the University of Washington Meal and Memory Study. I participated in the Meal and Memory Study myself last year, shortly after receiving my 23andme jackpot of not one but two shiny E4s. I was alarmed and more than a little freaked out at first, but have settled into a mindset of gratitude for discovering this apoe4.info forum. The welcoming forum community and the awareness of potentially beneficial choices (diet, supplements, exercise, etc) have been truly life altering for me.
I personally have enjoyed exploring the various UW studies and resources as they become available. While Dr Angela Hanson herself is aware of the Apoe4.info forum and has discussed it with me [/quote]
Here's a link to more information about the wide range of studies for which Harborview is seeking volunteers: Participate

One more bonus: Seattle has an active group of ApoE4.info members who were getting together regularly before COVID-19. I hope that soon they will be able to do so again, either virtually or in person. If you're interested, just add a quick port to this forum topic: Seattle Meet-up Thank you for your interest!!
4/4 and still an optimist!
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carrie
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by carrie »

mKm wrote:Love to participate. I am in the Seattle area and have easy access for blood draws. I’m willing to come to SF for any items that must be done there.
Hello mKm!

Welcome to the ApoE4.info community. The ApoE4 site contains a wealth of information and a warm community. In the event you haven't had the opportunity to explore, I wanted to provide the following links I found helpful when I joined.

The Primer was written by a physician member of the community. I found it very insightful as a starting point when I began researching.

The How-To Guide found within the Wiki includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote button (") when replying to a post. Using this button will automatically alert the member of your response. It really helps keep the conversation rolling.

Lastly, I'd like to welcome you to introduce yourself to the community on Our Stories.

Again, a warm welcome to ApoE4. If you have any questions about navigating the site, please don't hesitate to reach out.

Looking forward to seeing you around the forum. Until then. . .
Take care,
Carrie
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by wdlucemd »

Hello all! I am a 74 year old internist and my wife is APOE4/4. She is beginning to have symptoms and I am excited to learn of this site and to enter into all parts of this site. I am encouraging my wife to join as well. Thank you. David L
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by Tincup »

wdlucemd wrote:Hello all! I am a 74 year old internist and my wife is APOE4/4. She is beginning to have symptoms and I am excited to learn of this site and to enter into all parts of this site. I am encouraging my wife to join as well. Thank you. David L
Welcome David, from a low hanging fruit perspective, you may want to read through this thread on brain energy expenditure. Some of the linked presentations on the topic would be appropriate to watch. If you've not already read our primer or Dale Bredesen's two books, they are linked in this post.
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carrie
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by carrie »

wdlucemd wrote:Hello all! I am a 74 year old internist and my wife is APOE4/4. She is beginning to have symptoms and I am excited to learn of this site and to enter into all parts of this site. I am encouraging my wife to join as well. Thank you. David L

Hello David!

Welcome to the ApoE4.info! I am so glad you found the site and hope you and your wife will enjoy interacting with the community. There is a wealth of information contained within the site. At first glance, it can be overwhelming. When I joined, I found the following very helpful:

Our Stories is a place to get to know some of the members of the community. If you are so inclined, please consider sharing your story.

A great place to begin your research is the Primer. This post was written by a physician member of the community. It is an organized and thoughtful post providing background on the research of the APOE gene along with possible prevention strategies.

As far as navigating the site, I found the How-To Guide to be extremely helpful. There are tips on navigating the forum, making a post, and using private messaging. One tip in particular is using the quotes (") button when posting a reply. By using the quotes, the member will be automatically alerted of your response. It really helps keep the conversation flowing.

If you have any questions about the site, I am happy to help. In the meantime, I am looking forward to seeing you around the forum. Until then. . .
Take good care,
Carrie
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by NF52 »

wdlucemd wrote:Hello all! I am a 74 year old internist and my wife is APOE4/4. She is beginning to have symptoms and I am excited to learn of this site and to enter into all parts of this site. I am encouraging my wife to join as well. Thank you. David L
A warm welcome, David, from someone who could be your wife's genetic sister, since I am also ApoE 4/4 and 68 years old. This is a welcoming community, although getting the hang of finding posts can be tricky! If your wife is like me, she might appreciate some encouraging news right about now, so here are a few excerpts from what appear to be well-designed interventions to improve the cognitive skills of people who may be similar to her:

The first study's results are not surprising: people who engaged in aerobic exercise (AE) and the DASH diet showed improvements in executive functioning, but not memory or language fluency (For what it's worth, while "slip of the tongue" moments are frustrating, my own sense is that being able to plan, organize and handle everyday tasks requiring self-monitoring is more important to our sense of independence.)
Results: Participants who engaged in AE (d = 0.32, p = 0.046) but not those who consumed the DASH diet (d = 0.30, p = 0.059) demonstrated significant improvements in the executive function domain. The largest improvements were observed for participants randomized to the combined AE and DASH diet group (d = 0.40, p = 0.012) compared to those receiving HE. Greater aerobic fitness (b = 2.3, p = 0.049), reduced CVD risk (b = 2.6, p = 0.042), and reduced sodium intake (b = 0.18, p = 0.024) were associated with improvements in executive function. There were no significant improvements in the memory or language/verbal fluency domains.
https://n.neurology.org/content/92/3/e212

More exciting is the following study of virtual exercise (which is the only safe way right now for many):
This randomized clinical trial (RCT), the Aerobic and Cognitive Exercise Study (ACES) ... compares the effects of 6 months of an exer-tour (virtual reality bike rides) with the effects of a more effortful exer-score (pedaling through a videogame to score points). Fourteen community-dwelling older adults meeting screening criteria for MCI (sMCI) were adherent to their assigned exercise for 6 months. The primary outcome was executive function, while secondary outcomes included memory and everyday cognitive function. Exer-tour and exer-score yielded significant moderate effects on executive function... Both exer-tour and exer-score conditions also resulted in significant improvements in verbal memory. Effects appear to generalize to self-reported everyday cognitive function. Pilot data, including salivary biomarkers and structural MRI, were gathered at baseline and 6 months; exercise dose was associated with increased BDNF as well as increased gray matter volume in the PFC and ACC. Improvement in memory was associated with an increase in the DLPFC. Improved executive function was associated with increased expression of exosomal miRNA-9. Interactive physical and cognitive exercise (both high and low mental challenge) yielded similarly significant cognitive benefit for adherent sMCI [subjective mild cognitive impairment) exercisers over 6 months. A larger RCT is needed to confirm these findings.
https://www.frontiersin.org/articles/10 ... 00076/full

If you and your wife are interested in clinical trials seeking to enroll people who may have mild cognitive impairments and ApoE 4, you may want to look into a recent award of $47 million from the NIA for a study targeting toxic amyloid beta oligomers using a prodrug version of tramiprosate, ALZ-801. Here's an excerpt from the Alzheon press release:
The Phase 3 study is designed to evaluate ALZ-801 in 300 patients with Early AD and the APOE4/4 genotype. Subjects will be randomized to receive 265 mg tablets of ALZ-801 or a matching placebo twice daily for 18 months. The study will evaluate the cognitive endpoint, Alzheimer’s Disease Assessment Scale–cognitive subscale (ADAS-cog), as the primary clinical outcome, and other functional, behavioral, and global clinical endpoints. Biomarker assessments will include plasma and cerebrospinal fluid (CSF) measures of core AD pathologies (amyloid and phosphorylated tau protein) and of neurodegeneration (neurofilament light chain protein, tau protein, and neurogranin), and neuroinflammatory markers. Imaging biomarkers will include measurements of hippocampal volume and cortical thickness. The independent co-chairs of the Steering Committee for the Phase 3 trial are Dr. Anton Porsteinsson and Dr. Marwan Sabbagh, Director of the Cleveland Clinic Lou Ruvo Center for Brain Health. Alzheon plans to initiate the Phase 3 trial in 1Q 2021.
https://alzheon.com/alzheon-awarded-47- ... s-disease/ [Note: I have no disclosure conflicts with ALZ-801 and am not a medical professional.]

I have recently worked on projects with several people who have been diagnosed with MCI and AD and continue to be active in their communities. Having spent my career working with students with special needs, especially those with traumatic brain injuries, I am convinced that we are best when we look at our strengths and find creative work-arounds (or delegation!) for our weaker areas. Memory is useful, but feelings, values and preferences are what make us able to love and be loved. Tell your wife I'm looking forward to her joining us if she chooses, and hope she finds joy and purpose in each day.
4/4 and still an optimist!
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