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

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

Postby riptide » Sat Dec 19, 2020 11:53 pm

There are two people in my household who would like to participate. I did not see where I can put my information in the poll.

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

Postby Tincup » Sun Dec 20, 2020 7:08 am

riptide wrote:There are two people in my household who would like to participate. I did not see where I can put my information in the poll.


See NF52's prior response.
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby msdorney » Sun Dec 20, 2020 10:05 am

riptide wrote:There are two people in my household who would like to participate. I did not see where I can put my information in the poll.


Hi riptide. I see that TinCup was able to answer your question by pointing you to a post by NF52 with a wealth of information about the study. I did also notice that this is your first post in the forum and I wanted to extend a warm welcome to you. You may want to introduce yourself or get to know the other members here in Our Stories. It is a great way to connect with other users of the site. You can share as much or as little as you like. You may want to read the Primer whihc was complied by a docotr who is APOE4 positive. Finally, here is a How To Guide that is very helpful in learning to get the most out of using the site and forums. Please let us know if there is anything else you need. We're happy to help!

Warm regards,
msdorney

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

Postby ChristinaA » Sat Jan 30, 2021 11:30 am

Are Canadians are able to par take. I do my own quarterly biomarker testing but this study would be such a gift to get many more and be a part of the change. please let me know if I could part take
Last edited by ChristinaA on Sat Jan 30, 2021 11:36 am, edited 1 time in total.
Knowledge is power!

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

Postby ChristinaA » Sat Jan 30, 2021 11:32 am

I can't seem to respond to the poll, can anyone tell me how to? thanks
Knowledge is power!

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

Postby ChristinaA » Sat Jan 30, 2021 11:35 am

newkana wrote:Interested, but I am assuming this study is limited to the USA members. I am in Canada

Me too, would love to be a part of it.
Knowledge is power!

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

Postby NF52 » Sat Jan 30, 2021 12:18 pm

ChristinaA wrote:Are Canadians are able to par take. I do my own quarterly biomarker testing but this study would be such a gift to get many more and be a part of the change. please let me know if I could part take
Hi Christina,

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 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:

https://alzheimer.ca/en/research/participate-research

Health Canada Clinical Trials

http://c5r.ca/
The Consortium of Canadian Centres for Clinical Cognitive Research (C5R). This not-for-profit research network has more information on how drugs are approved in Canada, and how to participate in a clinical trial in Canada.

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 had participation from sites in Montreal and Toronto (and possibly other CA cities). 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

Good luck with your own self-monitoring!
4/4 and still an optimist!

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

Postby ChristinaA » Sat Jan 30, 2021 12:33 pm

Excellent information, thank you so much.
C



NF52 wrote:
ChristinaA wrote:Are Canadians are able to par take. I do my own quarterly biomarker testing but this study would be such a gift to get many more and be a part of the change. please let me know if I could part take
Hi Christina,

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 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:

https://alzheimer.ca/en/research/participate-research

Health Canada Clinical Trials

http://c5r.ca/
The Consortium of Canadian Centres for Clinical Cognitive Research (C5R). This not-for-profit research network has more information on how drugs are approved in Canada, and how to participate in a clinical trial in Canada.

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 had participation from sites in Montreal and Toronto (and possibly other CA cities). 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

Good luck with your own self-monitoring!
Knowledge is power!

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

Postby Mary Lou » Sat Feb 06, 2021 10:31 am

I am interested in being part of this study and research.
Mary Lou DeFino

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

Postby NF52 » Sat Feb 06, 2021 12:45 pm

Mary Lou wrote:I am interested in being part of this study and research.
Mary Lou DeFino
Welcome again, Mary Lou!

I'm glad you've been able to explore around the forum topics since your first post in December. Sounds like you've already done some great things to chart a different path for your future than your sister's diagnosis. (As an aside, the term "early stage Alzheimer's" may be what her doctor diagnosed, with is only slightly more advanced than "mild cognitive impairment." It is confusingly similar to the term "Early Onset Alzheimer's" which is usually reserved for people who are diagnosed before the age of 65. Any diagnosis after than, even those 67-70 still seems "young" to you and me, is considered "Late-Onset Alzheimer's disease" (or LOAD)
Like you, I am a retired educator and a year older than you. We earned extra cognitive reserve from all those years working with kids and teaching them how to broaden their worlds! For us, the question of our brain health, and whether those moments of feeling like our brains are not always cooperating at the level we want and need can be scary.

Looking for a way to participate in research is something that I have found serves the need to contribute to answers hopefully for me and others our age and for those who are younger than us. And it's a great way to meet people who work in the field and sometimes to connect through this forum or others with clinical study participants!

As it turns out, this survey of interest got lots of replies, but is no longer recruiting. It became a study involving a few Bredesen-train doctors using the Bredesen protocol with their patients, and the study organizers have said that the results should be available later this year.

I have been fortunate to "meet" (some in person, most virtually or on this forum) more than two dozen people who have chosen to be involved in studies. 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.

You are right in the age group that these studies seek for participation and since the process of joining or staying in a study is always in your control and governed by very strict guidelines for your privacy and informed consent, you may want to explore some of these.

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 If you'd like some help finding studies in your region, feel free to send me a Private Message with your location, (or you can posture nearest big city in a reply) and I'd be glad to provide you some information.
4/4 and still an optimist!


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