Where can I find studies to participate in?

[viaswiss]

I have APOE-4 and my grandfather just died from AZ. I am in my 30s so the few studies I have seen I am too young for. But surely there are some out there that want to study over a longer period of time.

So where all do I look for these studies to enroll in?

[NF52]

I have APOE-4 and my grandfather just died from AZ. I am in my 30s so the few studies I have seen I am too young for. But surely there are some out there that want to study over a longer period of time.

So where all do I look for these studies to enroll in?

Please accept my heartfelt sympathy for the recent loss of your grandfather. My three children are in their 30's, like you. Like you, they experienced the loss of both grandmothers from dementia. I noticed that just a month ago you referred to your grandfather as having advanced dementia, so I assume his death is very recent. I hope over time you, like my children, find that the memories of your grandfather with you when he was well, bring comfort that he would have felt privileged to see you grow up.

As for studies, I wish I could point you to some, since at age 67 I have enjoyed being in a long-term study of health people with ApoE 4/4. The reason that no major studies of people in their 30's exist is that the key research priorities right now seem to be three-fold:

1) Find disease-modifying therapies that slow or reverse progression of Alzheimer's in early stages, such as Mild Cognitive Impairment (MCI) or early-stage AD. These studies recruit people with those diagnoses; an example is the FDA's recent approval of Biogen re-starting a 2-year, open-label trial of aducanumab, which has been shown to be relatively safe and appears to reduce progression by 30-45% in MCI and mild AD.

2.) Find disease-prevention therapies for people with biomarkers and/or genetic risk factors that suggest they have pre-clinical Alzheimer's disease occurring even with normal cognition. The goal here is to find one or more upstream triggers and disrupt that process to slow or halt disease progression. Generally these are people 55-75 with ApoE 4, elevated levels of toxic amyloid-beta in the brain and/or strong family history. This is similar to finding people with cardiac plaque or strong family history of early heart attacks and research in the last 20-30 years to find disease prevention treatments in addition to lifestyle recommendations.

3. Conduct intensive basic research into multiple avenues that could lead to what scientists call "novel target identification"--something we can prove to be important and can then develop a treatment to increase or reduce as needed, or something we've found that seems to be common in people who don't get AD (like ApoE 2) that we can reverse engineer, or even use CRISPR gene editing to "fix" risk genes.

I have talked with scientists your age while acting as a "consumer reviewer" for grants administered through the Dept. of Defense studying TBI and Alzheimer's and other dementias. All of them emphasize two things: These are complex diseases; it took decades to figure out treatments for disease like multiple sclerosis and childhood leukemia. But we will get there: Progress is exponential on basic research, imaging techniques for the brain, biomarkers that are predictive and less invasive that PET scans, human pluripotent stem cell research, genome-wide association studies, machine learning to test old and new drugs against tau, plaques and other targets and drug development. And all support the kind of prevention and health strategies in our Primer.

So for now, celebrate your grandfather's life and honor his legacy by living a full life with purpose and kindness and eventually, joy.

[donbob]

Clinicaltrials.gov