New member

[borrisep]

Happy I have found this forum. I am interested in becoming part of research studies; especially brain scans to look for tau/amyloid proteins, and possibly medication interventions. I have searched via the NIH website and sent information to several places. If anyone has more leads I'd love to hear about them. Both of my parents died of Alzheimer's so I know what may lie ahead but we will all die one day and we don't usually get to chose how. But in the meantime I plan to incorporate the healthy living strategies I've been seeing and take it one day at a time. I live in Utah and I don't see many studies in this area; mostly AZ and CA nearby. Please share what you may find. Thank you, Becky

[rdpchef]

Hi Becky,

I'm so glad you have reached out and joined our forum. Many of us, myself included have lost several family members to Alzheimer's and Dementia. This is a great place to share, feel heard, and find the information that you are looking for. Your proactive attitude in learning as much as you can shows a lot of strength and courage.

There are many interventions that you can learn and many members on this site that you can learn from. I personally have Apoe 4/4 and follow the Bredesen Recode protocol. I made changes to my diet and lifestyle when I found out I had two copies of apoe 4. It's a process and It's a lot to take in, I find it easier to chip away a bit at a time. We have more experienced moderators on this forum that will see your post and can possibly point you directly to something closer to what you are looking for, as far as where to look for studies.

Below I have included some information that you may find useful on this site.

Please do not hesitate to reach out to me again if I can help in any way.

If you haven't already, it would be a great idea to first take a look at our Primer. It is an incredible resource of information about the biochemistry of ApoE4. It offers researched-based prevention strategies and was written by a practicing M.D. with ApoE4. Do not become overwhelmed with all the information. Sometimes it is best to slowly read through it, decide which section resonates with you, and focus on that area first. Remember that small changes can make a big difference to brain health.

The How-To Guide will help you learn how to navigate this site. It includes topics such as navigating the forum, private messaging, and searching.

You can find other members' experiences in Our Stories. Sometimes reading the stories of others helps us realize that we are not alone.

I'm so glad you have joined us on this site. Please feel free to reach out anytime with questions or if you just need support. You are not alone. We are here for you.

Take care,
Patty

Happy I have found this forum. I am interested in becoming part of research studies; especially brain scans to look for tau/amyloid proteins, and possibly medication interventions. I have searched via the NIH website and sent information to several places. If anyone has more leads I'd love to hear about them. Both of my parents died of Alzheimer's so I know what may lie ahead but we will all die one day and we don't usually get to chose how. But in the meantime I plan to incorporate the healthy living strategies I've been seeing and take it one day at a time. I live in Utah and I don't see many studies in this area; mostly AZ and CA nearby. Please share what you may find. Thank you, Becky

[NF52]

Happy I have found this forum. I am interested in becoming part of research studies; especially brain scans to look for tau/amyloid proteins, and possibly medication interventions. I have searched via the NIH website and sent information to several places. If anyone has more leads I'd love to hear about them. Both of my parents died of Alzheimer's so I know what may lie ahead but we will all die one day and we don't usually get to chose how. But in the meantime I plan to incorporate the healthy living strategies I've been seeing and take it one day at a time. I live in Utah and I don't see many studies in this area; mostly AZ and CA nearby. Please share what you may find. Thank you, Becky

Hi Becky!

Thank you for your interest in joining research studies and your search of the NIH website! You may have searched ClinicalTrialsgov or NIH:Find Clinical Trials. Researchers need people like you! Most studies on how to prevent, diagnose or treat Alzheimer's and other neurological diseases struggle to recruit enough participants. The people who lead those studies recognize that it's a problem when someone like you lives in Utah and the nearest studies are in Arizona or California. Right now, the only Clinical Trial site study in Utah I could find was Polaris ADfor people with Mild Cognitive Impairment (MCI) in Salt Lake City, at Wasatch Clinical Research.

Many studies are now moving to "remote" assessments, including blood-based biomarkers that can be collected at a lab near where people live, computer-based "digital" assessments that people can do from home, activity monitors that measure physical agility, balance and activity, and even speech assessments from recorded conversations. It's likely that these will become more common in the next few years.

APT Webstudy may be one you'd like to join. It's no-obligation and is sponsored by the Alzheimer's Clinical Trial Consortium (ACTC), an NIH-funded network of over 100 research sites seeking to accelerate and diversify clinical trial recruitment. I've been a member of the ACTC Research Participant Advisory Board since 2020 and know that the APT Webstudy is an easy way every 3 months to do some games using cards that are the same used in the AHEAD-45 trial that I am in. The data from the people who participate online is valuable because it's from people like you who are now near research centers and who may show how people with family history stay resilient.

You can also sign up for Trial Match, a service of the Alzheimer's Association with no obligation on your part. The Alzheimer's Prevention Registry will send you emails of studies that you may qualify for, with no pressure to join.
All of Us is a nationwide effort by the NIH to collect data--I think it's a great way to help research.

More medication studies and non-medication studies for prevention are coming in the next few years, especially for people in their 50's and older. Your parents would be incredibly proud of your desire to help science prevent and treat what they could not.

Nancy

[borrisep]

Nancy, Thank you for this information. I have joined the APT study and did my 1st assessment yesterday. I have also searched the NIH website for studies, and contacted the Banner Alzheimer's Institute for a Neuroimaging Initiative ADN14 study. I am not opposed to traveling to AZ (great to get out of winter in Utah for a warm visit).

Thank you for sharing this information. Becky

[NF52]

Nancy, Thank you for this information. I have joined the APT study and did my 1st assessment yesterday. I have also searched the NIH website for studies, and contacted the Banner Alzheimer's Institute for a Neuroimaging Initiative ADN14 study. I am not opposed to traveling to AZ (great to get out of winter in Utah for a warm visit).

Thank you for sharing this information. Becky

That’s wonderful, Becky! I know two people who are in ADNI4, which is the 4th round of the first major study of people with family AD history that has made most of the current generation of research possible, including biomarker imaging and blood tests, and better cognitive tests, and studies of how amyloid, tau and other proteins develop over decades, not years. I hope you have the opportunity to participate!
And Arizona and Utah are both beautiful!