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

joanie70
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by joanie70 »

How do we apply for the study?
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by NF52 »

joanie70 wrote:How do we apply for the study?
Welcome, joanie70!

I notice that you joined as a member last March--right about the time we all discovered what COVID-19 and a pandemic was going to be changing our plans for 2020! We're really glad you're posting with a question, since most of us did that in our first posts. This is a place where every question can lead to sharing of new ideas, all from people like you who want to make sure they are empowered to make decisions for themselves.

Apoe4.info has a lot to take in, so I hope you feel free to follow up and tell us some more about your story and your interests in clinical studies on Our Stories. If you haven't seen it yet, we recommend our PRIMER as the ideal starting place for your journey. Authored by a member physician who carries two copies of the APOE-ε4 allele, the Primer thread offers accessible science background and prioritized, sensible preventative measures. And for tips on quoting members using the quotation mark in the upper right hand corner of every post, or searching for topics, the How-To guide has lots of helpful advice, complete with screen shots to walk you through each step.

Here's a bit of disappointing news--followed by lots of great news on other studies!

The "Urgent Study" referenced in the title of this thread was completed in late 2020, according to one of the doctors using the Bredesen protocol with their patients. They are not currently recruiting for that study and hope to publish their results later this year.

The good news is that MANY studies are seeking people with ApoE 4, or with a family history of Alzheimer's, or with a desire to help move the research into what can be done to reduce the risk and improve the health of people so that Alzheimer's is prevented or delayed or made into a disease that we can "live with" rather than "die from".

I have been in a two-year clinical trial and been fortunate to meet (some in person, many on this forum) more than two dozen people who have chosen to be involved in studies. All of them agree with me that being in a clinical study is a great learning experience, with support from study coordinators and researchers.

If this sounds interesting, here are some short (2-minute) videos from the National Institute on Aging (part of the National Institutes of Health) with real people who don't have Alzheimer's explaining why they participate in prevention research and answering some questions you may have about what happens:

Why I Participate in Alzheimer's Research - Kay's Story
Why I Participate in Alzheimer's Research - Bob's Story
Why I Participate in Alzheimer's Research - Keretha's Story

And here are some links to "observational" studies--not using drugs or treatments, simply recruiting lots of people to gather information on their brain health over time:
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 National Institute on Aging also sponsors the
The Alzheimer's Prevention Initiative[API] is an international effort to help identify pre-symptomatic treatments or interventions that will postpone, slow, or prevent Alzheimer’s disease progression. This focus on prevention launched a new approach to Alzheimer’s research by evaluating the most promising therapies at the earliest possible stage of the disease process in cognitively normal people who, based on age and genetic background, are at highest risk of developing Alzheimer’s symptoms. The goal of API is to identify pre-symptomatic treatments or interventions that will postpone, slow, or prevent disease progression.
You can learn more about joining this registry for notification of current and future research trials here and will then also get periodic newsletters about new research findings: End Alzheimer's Now

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.)

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

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 If you'd like some help finding studies in your region, feel free to send me a Private Message with your location, or reply with the name of your nearest big city and I'd be glad to provide you some information.

I hope you jump in anywhere you like on the forum, Joanie70. (As someone with a cousin named Joanie, I feel like we're pretty much all one big family here.)
4/4 and still an optimist!
Amykwill
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by Amykwill »

I’m interested if this is still open.
Thank you!
Amy W
apoe3/4
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Post by NF52 »

Amykwill wrote:I’m interested if this is still open.
Thank you!
Hi again, Amy!

Great work finding this "thread" on our site! Unfortunately, the study referenced in the title of this thread was completed in late 2020. If you are interested in other studies, you may want to go to my post just above and check out some of the links provided.
Here's a condensed version of my earlier post:

MANY studies are seeking people with ApoE 4, or with a family history of Alzheimer's.

Here are some links to "observational" studies--not using drugs or treatments, simply recruiting lots of people to gather information on their brain health over time:
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 National Institute on Aging also sponsors the
The Alzheimer's Prevention Initiative[API] is an international effort to help identify pre-symptomatic treatments or interventions that will postpone, slow, or prevent Alzheimer’s disease... in cognitively normal people who, based on age and genetic background, are at highest risk of developing Alzheimer’s symptoms.
You can learn more about joining this registry for notification of current and future research trials here and will then also get periodic newsletters about new research findings: End Alzheimer's Now

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. It uses a brief questionnaire and computer/tablet-based assessment (with playing cards!) that you do every 3 months. They provide a "dashboard" showing how your results compare to those expected at your age within a few days of the test. It shows a graph in which anything between -10 and + 10 (with zero in the middle) is within normal limits. You can find information and a video about it here: APT Webstudy Welcome (Full disclosure: I am on the Research Participant Advisory Board for the ACTC as a former participant in a clinical trial of people with ApoE 4/4 with normal cognition.)

The Alzheimer's Association website provides a Trial Match of studies that include non-drug trials. You can read more here:
Trial Match

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

If you'd like some help finding studies in your region, feel free to send me a Private Message with your location, or post a reply with the name of your nearest big city and I'd be glad to provide you some more specific information. Hope this helps!
4/4 and still an optimist!
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