Clinical Trials

[BEM]

Hi. I am new to this site and like many of you I have the 2 markers for the ApoE4 gene. I am only 56 and would like to help any research happening for AD. I called the Alz Assoc only to find out that most, if not all the studies involve people already suffering from the disease or they have told me I am too young. I was under the impression that many of these studies were looking for young people who are not yet showing signs, have at least the 2 genetic markers & have a family history. I fall into all 3 categories and I am a woman, which they said they were looking for in these trials.
I was so shocked to learn that the science is still focusing on slowing it ONCE the disease has take hold as opposed to trying to prevent it or at least slow the start through diet, exercise and lifestyle.
Can anyone guide me in this...Does anyone know of any studies being done on prevention as opposed to maintenance? I would be interested in any study that could help answer questions on how this disease develops etc.
I really would appreciate any help. At this point, I am blindly stumbling through this new normal of mine and I think if I could make a contribution through a study then it would help me to feel useful in my present state of helplessness.

[NF52]

Does anyone know of any studies being done on prevention as opposed to maintenance? I would be interested in any study that could help answer questions on how this disease develops etc.
I really would appreciate any help. At this point, I am blindly stumbling through this new normal of mine and I think if I could make a contribution through a study then it would help me to feel useful in my present state of helplessness.

A warm welcome, BEM, from another woman with ApoE 4/4 and a family history of dementia and still good health and cognition at almost 66. I think it's wonderful that you are looking for some way to make a contribution through a study, especially since it sounds like you just recently found out your status. At your age I had just found out and was "blindly stumbling" for what felt like a long time.

The good news is that while you are "too young" for some of the prevention trials, you are getting close to the magic age of 60, when you'll be eligible for some of those trials. The dilemma for clinical trials is that many researchers think eventually they will find drugs that can be given to people at-risk because of ApoE 4 possibly decades before any plaques, tangles, or other pre-clinical signs of disease show up. But in order to get there, they have to try the drugs on people who are in what I've seem termed "the sweet spot": still healthy, but old enough to be reasonably likely to show changes on one or more measures. Those could be as marked as moving from "healthy" to "Mild Cognitive Impairment" or as subtle as increased amyloid plaques, changes on cognitive tests of immediate and medium term memory, visual perception, and daily living skills. The ages for the "sweet spot" right now are usually 60-75, and the trials are "enriched" (i.e. loaded for more likely to be at-risk) by enrolling people with one or two ApoE4 alleles, and/or family history, and/or amyloid deposits on a PET scan.

Along with at least 3 other people on this site, I'm enrolled in one of those trials, the Generations Study, which started in 2015 and will continue to 2023. (To see if these drugs work and are safe, they need participants who are willing to take the drug or placebo for up to 5 years.) Like you, we want to make a difference, if not for ourselves then for our children and others, and even if the drugs we're taking aren't effective, the knowledge gained should help move the science ahead significantly.
I am sure that even before you turn 60, if you're still interested, you will be able to find a site that is recruiting, or would love to have your participation when you turn 60. Here's a link to the government site for Clinical trials, specifically in this case for Generations 2, which started in August 2017, and will run through July 2024. https://clinicaltrials.gov/ct2/show/NCT03131453?term=Novartis.+generations&cond=Alzheimer+Disease&rank=1 If you go on the https://clinicaltrials.govsite you can search for clinical trials that are recruiting now, and read descriptions of who they are seeking, as well as the study description, location sites, etc.

For now, that feeling of helplessness does dissipate with time and with the knowledge that many protective factors and as-yet-not-well-understood genetic and environmental factors affect risk. If you need to share some more of those feelings, or hear how some of us got past that, let us know what would help. Lots of people have found that Dr. Bredesen's recent book has been helpful in giving them a feeling of control over at least some lifestyle interventions.

Hugs, my 4/4 "sister".

[ccfield]

Hi BEM,

Welcome! We are glad that you found us. This site has much information on prevention and I know that the members here will have answers to your questions regarding prevention studies.

A great place to start is with the site Primer that was written by physician member Stavia. It is full of incredibly useful and informative material. You can find it at: viewtopic.php?f=33&t=1418 . As Stavia writes in the Primer, "Many of us believe that genetics is not destiny." This is a strong sentiment on this site!

Again, welcome BEM. Feel free to ask more questions, as the members on this site are happy to help.

- Carrie

[BEM]

Thank you, NF52 & Carrie for welcoming me with such a treasure trove of information. I am sorry that any of us have to belong to this type of site but it's comforting to know the is this wonderful site where others may share my feelings of being overwhelmed at times but have successfully moved on to effective strategies to keep this "time bomb" at bay and to help others avoid it altogether by sharing various information and being part of studies that will advance the science for future generations.
I so appreciate having a place to go to explore various options and a place to learn what others are doing. I suppose I can feel lucky since it seems, in my family, no one has gotten this horrific disease before the age of 80. That gives me years of living and learning....and I hope helping.
Thank you, again, for such a warm and caring welcome.

[Stavia]

Welcome BEM from a fellow 4/4.
Take it one day at a time, dont panic, start with the basics in our Primer and go from there. Maybe go to our wiki next (drop down from the three vertical dots next to your name; the handy search function is there too, so you aren't delayed in your learning)
At 56 there is time to carefully and systematically arm yourself with knowledge.
I'm a year older than you and I'm not panicked (any more lol)
It's a huge shock. It will get easier, I promise.

Sent from my SM-G930F using Tapatalk

[Jan]

...I so appreciate having a place to go to explore various options and a place to learn what others are doing. I suppose I can feel lucky since it seems, in my family, no one has gotten this horrific disease before the age of 80. That gives me years of living and learning....and I hope helping. ...

Glass half full ... makes a big difference!

[MarkL]

Hi BEM,

Depending on where you are located there may be a Medical Center offering AD research related services.

My wife and I recently signed up for this one in Boston. The commitment is an annual cognitive exam.
In time it may provide access to clinical trials..
http://www.bu.edu/alzresearch/research/ ... dies/hope/

I have a relative in North Carolina and she added her name to the AD registry at Duke.
https://neurology.duke.edu/prevention-registry

Mark

[slacker]

Welcome MarkL;

NF52 posted a few more options for clinic trials a few posts before yours in this thread (you may already have seen it). When you are ready, please tell us more about yourself in the "Our Stories" forum.

[jeff]

Neurology dpt. at uc Irvine is recruiting for niacinimide study=3000 mg divided into 4x/d They are the folks that made the news claiming they "cured" transgenic mice of AD. They told me it's not toxic at 3000. Why bother to risk getting the placebo. I am
going to build up to 3000. If it's not toxic, then if it helped my mouse brethRENI am going to take a shot at it. BUT get your liver checked periodically. I think the study is for a yr. jeff NOT NIACIN THEY DON'T WANT YOU TAKING NIACIN.JEFF

[rrao2015]

Hi. I am new to this site and like many of you I have the 2 markers for the ApoE4 gene. I am only 56 and would like to help any research happening for AD. I called the Alz Assoc only to find out that most, if not all the studies involve people already suffering from the disease or they have told me I am too young. I was under the impression that many of these studies were looking for young people who are not yet showing signs, have at least the 2 genetic markers & have a family history. I fall into all 3 categories and I am a woman, which they said they were looking for in these trials.
I was so shocked to learn that the science is still focusing on slowing it ONCE the disease has take hold as opposed to trying to prevent it or at least slow the start through diet, exercise and lifestyle.
Can anyone guide me in this...Does anyone know of any studies being done on prevention as opposed to maintenance? I would be interested in any study that could help answer questions on how this disease develops etc.
I really would appreciate any help. At this point, I am blindly stumbling through this new normal of mine and I think if I could make a contribution through a study then it would help me to feel useful in my present state of helplessness.

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MODERATOR UPDATE: This post has been removed as it violated the "Trust" provision of our Community Guidelines that prohibits members from advertising or self-promoting. The information has been moved to our wiki list of ApoE4 Aware Practitioners.