AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

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Chicagogirl
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AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

In 2017 I started my journey understanding what being 4/4 meant to me. I enrolled in the Generations Study that year. This was a BACE-inhibitor to prevent amyloid plaques from forming. The hardest part was sitting in a room and hearing a voice (counselor from study) telling me I was 4/4 and what that meant. That trial ended in 2019. It was a very long and quiet drive home for my husband and me that day. I felt overwhelmed knowing I was 4/4 and all the questions….do I tell our daughter, family etc. I enrolled in the study and started researching APOE 4 and found this site and many others. I also found on this site 4 other women (in this study) around my age and we became close friends during our journey. Many emails, phone calls and visits helped all of us ease into this new world.

I recently decided to find out if I am eligible to join the AHEAD Study. The first step is to determine if there is Amyloid in my blood. If there is Amyloid there are a number to screening steps to go through before enrolling. The AHEAD Study is the first research study that aims to help prevent Alzheimer’s disease by enrolling participants as young as 55. I am now waiting for the blood test results.

WHO IS ELIGIBLE?
-Are a healthy, non-smoking adult, between the ages of 55 and 80.
-Have not been diagnosed with Alzheimer’s disease.
-Have elevated to intermediate levels of amyloid in the brain (a protein shown by brain imaging, as part of the study screening process).

HOW TO PARTICIPATE?
-Make a four- year commitment involving in-person and telephone visits with study researchers every two to four weeks
-Have a close friend or relative, who sees and talks with the participant every week, who can serve as their study partner. (My understanding is the partner attends 2 of the 5 screening visits and then once a year).
-Participant receives $50 per visit they attend for their time.
For further information visit: https://www.aheadstudy.org/

So… I am on another journey. Over the past 5 years I have come to a peaceful place regarding being 4/4. I take a swim class 4 days a week and an exercise class 2 days. I volunteer, did the finances for a non-profit organization and am more careful about what I eat. I believe you need to embrace being 4/4 and find a way to control your feelings about it. For me it was enrolling in clinical trials. They may not cure me, but my hope that this small part that I play may help others in the future.
Last edited by Chicagogirl on Sun Sep 04, 2022 8:14 am, edited 2 times in total.
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
Nicnac0526
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Nicnac0526 »

Chicagogirl wrote: Sat Aug 27, 2022 1:26 pm In 2017 I started my journey understanding what being 4/4 meant to me. I enrolled in the Generations Study that year. This was a BACE-inhibitor to prevent amyloid plaques from forming. The hardest part was sitting in a room and hearing 3a voice (counselor from study) telling me I was 4/4 and what that meant. That trial ended in 2019. It was a very long and quiet drive home for my husband and me that day. I felt overwhelmed knowing I was 4/4 and all the questions….do I tell our daughter, family etc. I enrolled in the study and started researching APOE 4 and found this site and many others. I also found on this site 4 other women around my age and we became close friends during our journey. Many emails, phone calls and visits helped all of us ease into this new world.

I recently decided to find out if I am eligible to join the AHEAD Study. The first step is to determine if there is Amyloid in my blood. If there is Amyloid there are a number to screening steps to go through before enrolling. The AHEAD Study is the first research study that aims to help prevent Alzheimer’s disease by enrolling participants as young as 55. I am now waiting for the blood test results.

WHO IS ELIGIBLE?
-Are a healthy, non-smoking adult, between the ages of 55 and 80.
-Have not been diagnosed with Alzheimer’s disease.
-Have elevated to intermediate levels of amyloid in the brain (a protein shown by brain imaging, as part of the study screening process).

HOW TO PARTICIPATE?
-Make a four- year commitment involving in-person and telephone visits with study researchers every two to four weeks
-Have a close friend or relative, who sees and talks with the participant every week, who can serve as their study partner. (My understanding is the partner attends 2 of the 5 screening visits and then once a year).
-Participant receives $50 per visit they attend for their time.
For further information visit: https://www.aheadstudy.org/

So… I am on another journey. Over the past 5 years I have come to a peaceful place regarding being 4/4. I take a swim class 4 days a week and an exercise class 2 days. I volunteer, did the finances for a non-profit organization and am more careful about what I eat. I believe you need to embrace being 4/4 and find a way to control your feelings about it. For me it was enrolling in clinical trials. They may not cure me, but my hope that this small part that I play may help others in the future.
Welcome Chicagogirl,
Wow. Your resilience, positivity and are truly amazing. To find a peaceful a peaceful place after 5 years is impressive. As I am sure that you are aware, there is no certainty but everything that you are doing, including the peacefulness will support you on your journey.
You may well know the myriad of places on this forum, but as a support intern it is my pleasure to show you, just in case.
The How to Guide helps you navigate the forum, including one great tip; using the quote (") button when replying to a post. Using the button will automatically alert the member of your response. It really helps to keep the conversation going.
ThePrimer is an introduction and was written by a phenomenally informed and informative doctor.
Please do post questions, queries and thoughts because the support that this forum gives each other is completely two way.
With many warm regards.
Nicky
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Chicagogirl
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

Nicnac0526 wrote: Sun Aug 28, 2022 2:53 amWelcome Chicagogirl,
Wow. Your resilience, positivity and are truly amazing. To find a peaceful a peaceful place after 5 years is impressive. As I am sure that you are aware, there is no certainty but everything that you are doing, including the peacefulness will support you on your journey.
You may well know the myriad of places on this forum, but as a support intern it is my pleasure to show you, just in case.

Nicky
Thanks so much for your kind words and information!
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Tiramisu1984 »

After having my blood drawn in may, I received my results on September 1. I didn’t qualify. Yes, we had champagne.

Like you, I feel better trying to help research. I’m fine exchanging phone numbers or email to stay in touch and notify each other of potential trials.
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

Thought I would document my journey for those who are considering this study:

VISIT 1A - Approximately 1-2 hours. (There is a 1B, 2, 3, 4, 5)

Had to sign an informed consent for the screening procedures. The Nurse went through the document with me and highlighted the important information on each page. This has to be signed for them to continue (You can back out of the study at any time in the future). I then had a choice of signing another informed consent to learn my APOE status. If you don't want to know your status, you can decline. I already knew my status and said "yes". Then had 9 vials of blood drawn (not so bad). There is a lumbar puncture study which you can decline.

There were some general questions I had to answer, but no memory questions at this point. Now I wait 3-4 weeks to find out if I have Amyloid in my blood. This is a new test that allows them to test more individuals, before getting to the expensive tests: MRI, Amyloid PET Scan and a TAU PET Scan. If there is no Amyloid in your blood, you are not eligible to continue.

This does not guarantee you will officially be enrolled in the trial. The Amyloid PET Scan has to confirm how much amyloid in the brain you have. MRI Scan will determine if your brain is healthy enough to continue. Either of these could prevent enrollment.

STAY TUNED..........
Last edited by Chicagogirl on Thu Sep 15, 2022 7:39 am, edited 2 times in total.
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Chicagogirl
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

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Last edited by Chicagogirl on Thu Apr 06, 2023 9:12 am, edited 1 time in total.
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by J11 »

Chicagogirl, thank you very much for posting about your experience in the Lecanemab AHEAD study. It is always interesting to hear from those who have first hand knowledge about the protocols,etc.. Might you have an idea of how you might score on the MMSE or other such cognitive test? Many of these can be freely accessed online. I suppose with pre-AD the expectation would be 30 MMSE. Any other cognitive test that you might think of perhaps even a favorite online video game could be helpful.

Best Wishes, J11
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by floramaria »

Tiramisu1984 wrote: Sat Sep 03, 2022 8:57 am After having my blood drawn in may, I received my results on September 1. I didn’t qualify. Yes, we had champagne.
CONGRATULATIONS!!!!!
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

For those of you wanting to find out if there is a study location near you:

https://www.aheadstudy.org/find-location/

Here are the participation requirements:

https://www.aheadstudy.org/participation-requirements/

FACEBOOK page for study:

https://www.facebook.com/AHEADStudy/
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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Re: AHEAD 3-45 STUDY CLINICAL TRIAL (LECANEMAB - BAN 2401)

Post by Chicagogirl »

Thought I would document my journey for those who are considering this study:

RESULTS OF VISIT 1A (There is a 1B, 2, 3, 4, 5)

Received a message from the Study Nurse that I have been approved for the 1B screening. This means that Amyloid was found in my blood. Not unexpected since I am APOE 4/4. The results were available 3 weeks after the blood test. I may still be ineligible based on screenings in the following visits.

VISIT 1B will cover the following:

It will last approximately 3 hours, while the study partner's portion would take about 45 minutes.

It will consist of the following:
-Study Partner consent
-Cognitive assessments
-Questionnaires (for you and study partner)
-Vital Signs, ECG, and Physical/Neurological Exam

So the journey continues.......
;) 4/4 “Choose to be optimistic. It feels better.” Dalai Lama
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