ApoE4 Research

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Clinical Trials and Patient Registries focused on Alzheimer's and Related Dementias (AD/RD)

How You Can Participate and Why You Might Want to

Scientists can do wonders in the lab, with mice and induced pluripotent stem cells from healthy people with ApoE 4 and those with AD. But researchers can't do the work alone: they need people like you to take part in their research. Right now, 80% of studies are delayed because too few people sign up to participate. End Alzheimer's Now: Alzheimer's Prevention Registry

"Why I Participate":

Here are some short (2-minute) videos from the U.S. National Institute on Aging (part of the U.S. National Institutes of Health) with real people who don't have Alzheimer's explaining why they participate in prevention research, providing information about their experiences and comments from their Study Doctors on the importance of their participation in advancing prevention and treatments.

Why I Participate in Alzheimer's Research - Kay's Story
Why I Participate in Alzheimer's Research - Bob's Story
Why I Participate in Alzheimer's Research - Kerretha's Story
Why I Participate in Alzheimer's Research - Will's Story<br /.

Recent Advances in Lifestyle Prevention of AD/RD from Clinical Trials

  • Richard Isaacson, M.D. is Director of the Alzheimer's Prevention Clinic in NYC. In this 2018 review,Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach (2018) he and his team describe clinical trials that resulted in recommendations for targeted lifestyle interventions that are specific to APOE ε4 carriers. These include factors related to lifestyle, nutrigenomics (the effect of food on our genes), pharmacogenomics (the study of how our genes affect our responses to drugs), AD comorbidities (conditions associated with an increased risk of AD), and other biological and behavioral considerations. "Using a clinical precision medicine strategy that incorporates APOE ε4 carrier status may provide a highly targeted and distinct approach to AD prevention with greater potential for success." Here's what people like you who participated in research demonstrated about the benefits of physical activity in preventing Alzheimer's disease in ApoE4 carriers:
Physical activity
  • "A systematic review of 16 prospective studies concluded that physical activity decreased the risk of developing AD by 45%
  • "Physically active ε4 carriers had an OR [odds ratio risk of Alzheimer's] of 2.30 and sedentary ε4 carriers had an OR of 5.53
  • "Aerobic activity was associated with greater cognitive performance for ε4 carriers compared to non-carriers)".
  • "Sedentary individuals who were ε4 carriers had significantly higher levels of brain Aβ and lower levels of CSF Aβ42 compared to sedentary non-carriers, findings associated with AD pathology"
  • Dr. Isaacson notes that results of these studies with ApoE4 participants "have important implications for physical activity recommendations and suggest that increasing physical activity, while important for all AD prevention patients, may have more pronounced effects in ε4 carriers compared to non-carriers. The findings also suggest that physical activity may prevent Aβ accumulation that occurs in the brains of ε4 carriers before clinical symptoms of AD even become apparent

Flu, Pneumonia Vaccinations Tied to Lower Risk of Alzheimer's Dementia (July 2020)
Three research studies suggest that:

  • "At least one flu vaccination was associated with a 17% reduction in Alzheimer’s incidence. More frequent flu vaccination was associated with another 13% reduction in Alzheimer’s incidence."
  • "Vaccination against pneumonia between ages 65 and 75 reduced Alzheimer’s risk by up to 40% depending on individual genes."
  • "Individuals with dementia have a higher risk of dying (6-fold) after infections than those without dementia (3-fold)."
  • "With the COVID-19 pandemic, vaccines are at the forefront of public health discussions. It is important to explore their benefit in not only protecting against viral or bacterial infection but also improving long-term health outcomes,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “It may turn out to be as simple as if you’re taking care of your health in this way — getting vaccinated — you’re also taking care of yourself in other ways, and these things add up to lower risk of Alzheimer’s and other dementias,” Carrillo said. “This research, while early, calls for further studies in large, diverse clinical trials to inform whether vaccinations as a public health strategy decrease our risk for developing dementia as we age.”[Emphasis added.]

Blood Tests for Tau and Amyloid may replace need for PET scans and spinal taps and improve diagnosis July 2020'

  • A bit of background: Per Dr. Richard Isaacson of Cornell Weill Medicine's Alzeheimer's Prevention Program, "APOE ε4 carriers are at increased risk for developing AD and increased risk for developing the disease at an earlier age... Furthermore, studies have shown that individuals with two copies of the ε4 allele are at even greater risk, and the odds ratios for developing AD based on APOE is 5 times greater in APOE ε4 homozygotes [ApoE 4/4] compared to heterozygotes [ApoE 3/4 or 2/4]. Imaging studies have further supported these findings by demonstrating that APOE ε4 carriers have higher levels of brain amyloid-β (Aβ) and lower levels of CSF Aβ42 compared to non-carriers, findings that are associated with AD pathology. Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach (2018)===
  • A blood test for Alzheimer’s disease that incorporates both amyloid and tau measures may allow earlier and more accurate dementia diagnoses not only in research participants but also in patients referred to Memory Clinics for evaluation of possible cognitive impairment.
  • PET scans and spinal taps in healthy participants in clinical trials shows that not everyone with amyloid and tau develops AD/RD, BUT people with amyloid and tau are more likely to be diagnosed within 10-20 years with AD/RD.
  • As many as 30% of people in early studies of Alzheimer's may have had an incorrect diagnosis! Accurate blood tests to screen and monitor those at risk of AD/RD are crucial to finding ways to prevent, delay or treat these slow-moving diseases.
  • Scientists from St. Louis, Missouri launched the SEABIRD Study (Study to Evaluate Amyloid in Blood and Imaging Related to Dementia) (SEABIRD) "to develop and validate Alzheimer’s blood biomarkers in a cohort that is more diverse and representative of the greater St. Louis region. SEABIRD will enroll more than 1,100 individuals including diversity in race, socioeconomic status, medical history and cognitive status....they found that measuring levels of several different forms of p-tau in blood over time may enable clinicians and researchers to track the stages of Alzheimer’s progression in people living with the disease.

Alzheimer's Risk Factors May Be Measurable in Adolescents and Young Adults (2020)

  • Early Adult BMI (but not Late Life BMI) Associated With Late Life Dementia Risk
  • "Hgher early adulthood (age 20-49) body mass index (BMI) was associated with higher late-life dementia risk."
  • "Relatively little is known about the role of early life BMI on the risk of Alzheimer and other dementias....a total of 5,104 older adults from two studies, including 2,909 from the Cardiovascular Health Study (CHS) and 2,195 from the Health, Aging and Body Composition study (Health ABC), [of whom] 18% were Black and 56% were women {were studied].
  • "For women, dementia risk increased with higher early adulthood BMI. Compared to women with normal BMI in early adulthood, dementia risk was 1.8 times higher among those who were overweight, and 2.5 times higher among those who were obese."
  • They found no association between midlife BMI and dementia risk among women.
  • "For men, dementia risk was 2.5 times higher among those who were obese in early adulthood, 1.5 times higher among those who were overweight in mid-life and 2.0 times higher among those who were obese in mid-life, in models also adjusted for late life BMI."
  • For both women and men, dementia risk decreased with higher late life BMI.
  • Adina Zeki Al Hazzouri, Ph.D. of Columbia University and colleagues found that high BMI in adulthood is a risk factor for dementia in late life. The researchers suggest that efforts aimed at reducing dementia risk may need to begin earlier in life with a focus on obesity prevention and treatment.

Funding Areas in AD/RD Research through the U.S. National Institute on Aging

NIA-Funded Active Alzheimer’s and Related Dementias Clinical Trials and Studies Dec. 2020

  • Every year, the U.S. Congress approves funding for research into the epidemiology of Alzheimer's Disease (AD) and related dementia, including Parkinson's disease (PD), Lewy body Dementia (LBD, Frontal Temporal Dementia (FTD), vascular dementia (VD) and mixed dementia (Alzheimer's with one or more other dementias). As of early 2021, funding for Alzheimer's and dementia related research at the National Institutes of Health (NIH) is $3.1 billion, following an additional $300 million increase for fiscal year 2021. This is more than double the amount budgeted as recently as 2016. Alzheimer's Impact. Movement
  • The National Institute on Aging (NIA) is currently supporting 272 active clinical trials on Alzheimer’s disease and related dementias. NIA’s active trials include: early-stage clinical drug development, late-stage clinical drug development, non-pharmacological interventions, clinical therapy development for neuropsychiatric symptoms of dementia, and care and caregiver interventions. For more information on each of these ares, see this December 2020 list with detailed links in each area: NIA Ongoing AD Clinical Trials

Opportunities to Participate in Research

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.[/quote]
Alzheimer's Prevention Registry
  • The Alzheimer's Prevention Registryis an international effort to help identify pre-symptomatic treatments or interventions that will postpone, slow, or prevent Alzheimer’s disease progression. This focus on prevention launched a new approach to Alzheimer’s research by evaluating the most promising therapies at the earliest possible stage of the disease process in cognitively normal people who, based on age and genetic background, are at highest risk of developing Alzheimer’s symptoms. The goal of API is to identify pre-symptomatic treatments or interventions that will postpone, slow, or prevent disease progression. [/quote]You can learn more about joining this registry for notification of current and future research trials here and will then also get periodic newsletters about new research findings: [url=https://www.endalznow.org][color=#00BF00][b]End Alzheimer's Now[/b][/color][/url]
APT Web Study

APT Web Study is an innovative project of the Alzheimer's Clinical Trials Consortium (ACTC), a network of dozens of academic research centers collaborating to accelerate research, with funding from the U.S. National Institute on Aging. The APT Web Study is seeking for people who are 50 years or older and interested in accelerating AD research. Using an online, easy to use testing program that you can do on a laptop or tablet, they offer:

  • Access to secure, personalized, web-based tools to assess and track your cognitive performance
  • Opportunity to participate in comprehensive evaluations at one of our nationwide clinical sites
  • Opportunity to participate in clinical trials to prevent Alzheimer’s disease

You can view a brief video explaining the APT Web Study here.


  • TrialMatch™ " is a service that provides customized lists of clinical studies based on user-provided information. The free, easy-to-use platform allows you to see which studies are a good fit for you or a family member. Search for studies, sign up for study updates, or connect with researcher teams.
  • As TrialMatch™ says: "Don't just hope for a cure — help us find one."
Personal Genome Project at Harvard
  • The Personal Genome Project at Harvard began in 2005 and is now a member of the Network of Personal Genome Projects that has grown to include researchers at many leading institutions around the globe.
  • According to the PGP "Open data is a critical component of the scientific method, but genomes are both identifiable and predictive, so many studies don’t share their data. The PGP is a unique resource of public human data that allows open collaborative research on human genomes and biology. Donating your genome and health data to science is a great way to enable advances in understanding human genetics, biology, and health. We seek volunteers willing to donate diverse personal information to become a public resource."


  • The OpenSNP "allows customers of direct-to-customer genetic tests to publish their test results, find others with similar genetic variations, learn more about their results by getting the latest primary literature on their variations, and help scientists find new associations."