2020 - 2021
Healthy Brain Study Annual Report
Over the past year, the Emory Healthy Brain Study has worked to discover biomarkers that will predict Alzheimer’s disease and other dementias. We reached some incredible milestones in 2021. Learn more about the data we've collected, the team who helped us get there, and the participants who made it all possible.
If you had a chance to change the world, would you?
If you had a chance to end Alzheimer’s disease, would you? Welcome to the Emory Healthy Brain Study. This is your opportunity to partner with leading physicians at Emory University and help make discoveries that will change our understanding of Alzheimer’s disease for generations to come.
It's your contribution to a better future.
Our 3,000 Goal
3,000 registrants. That’s the number we’re aiming for, and we’re proud to say we’re 51% of the way there. We’re starting earlier; instead of trying to treat current diagnoses, we are looking for a diverse group of healthy individuals who are not experiencing symptoms of Mild Cognitive Impairment or dementia to enroll in the study. Our participants come from all ages, races, and walks of life. Because of the diversity required for this study, we utilized several different methods to reach potential candidates.
Return Visits
Baseline visits are important but so are return visits, and we are excited to announce participants have begun completing their third visit. By having participants return every two years, we can track changes within the body as we age. We can then look closely at these changes for the biomarkers that will help us predict who will develop Alzheimer’s. If you are unsure when your next visit will be, reach out us at healthyagingstudy@emory.edu!
Longevity
After pilot grants from The Goizueta Foundation enabled design and early implementation of the Emory Healthy Aging Study and Emory Healthy Brain Study, the National Institute on Aging has awarded the studies federal funding. Announced in February 2021, the grant guarantees that the Emory Healthy Brain Study will continue to lead the way in Alzheimer’s disease research.
How can you get involved?
Help us change our understanding of aging and age-related diseases for generations to come. It’s your contribution to a better future.
Have you seen our new space?
Located at 6 Executive Park Drive next to the Emory Brain Health Center, the new Alzheimer’s Clinical Research Unit houses many of Emory’s cognitive neurology programs including the Emory Healthy Brain Study. For those who have not yet seen the space, below is a virtual tour that will let you experience our incredible new facility prior to your next visit.
Participants
Meet the people who made it all possible – our participants. Their willingness to volunteer their time to our research has led to some astounding discoveries.
Fighting For Our Future
With COVID-19 pushing more programs into the digital spectrum, we moved to leverage it in a way that benefits our participants. Hosting webinars allows us to more easily share study updates and other relevant information in an interactive forum that connects study participants directly with our researchers. Hundreds of study participants have attended these events which have covered topics ranging from how diet affects the mind to addressing brain health disparities in people of color. Our recent Fighting for Our Future webinar event featured legendary radio host, KD Bowe, an exercise demonstration from John Lewis, and presentations from our researchers, Dr. James Lah and Dr. Monica Parker. The webinar event was recorded and can re-watched on YouTube. Contact us at healthybrainstudy@emory.edu to learn more about upcoming events.
Participants by Age
It can take years for symptoms of Alzheimer’s disease and other dementias to manifest. By working with candidates before they exhibit symptoms, we hope to identify biomarkers that will enable us to predict disease. With an effective means of prediction, we can then focus more on treatment and even prevention.
Participants by Gender & Race
We strive for diversity within the Emory Healthy Brain Study. It’s important that our research discovers how different people from all walks of life show signs of dementia and Alzheimer’s. So far, a large portion of our volunteers has been Caucasian females. To diversify our candidate pool, we used Facebook to reach other races and genders. By increasing our focus on African-Americans and male audiences with highly segmented social media advertising, we’re helping to bridge the gap in race and gender with our current volunteers.
Diversity
To understand how biomarkers may differ across race, we strive to have diversity amongst our participants. Minority groups, specifically African Americans, are afflicted by Alzheimer’s and dementia at higher rates than Caucasians. In fact, African Americans are twice as likely to develop Alzheimer’s disease compared to Caucasians. For this reason, we are striving to increase the diversity of our cohort. Several recent initiatives include a new minority engagement group that leverages the expertise of Monica Parker, MD, Clint Dye, PhD, Cornelya Dorbin, MPA, and Crystal Davis. Through their efforts, the Brain Talk Live webinar, which averages 200 weekly viewers, is now comprised of more than 50% African Americans. They have also established a Men's Minority Health Matters virtual series, have partnered with Dr. Ambar Kulshrestha to diversify the Asian American cohort, and their OREC (Outreach, Recruitment, and Education Core) is working to expand outreach to the LGBQT population.
Participant Story:Brenda Jefferson
New to clinical research, Brenda hopes her participation will serve as an inspiration to other women in the African American community.
Participant Advisory Committee
The Emory Healthy Brain Study team is dedicated to improving the experience for participants, which is why we have formed a participant advisory committee to help inform various study decisions. This committee, formed of current study participants and guided by Emory leadership, uses participant feedback to improve study visits. Another topic for this committee is to advise on sensitive issues related to the disclosure of established Alzheimer’s biomarker results that can identify individuals at greater risk of developing the disease. The committee held its first meeting in August and will continue to meet quarterly.
Health History Questionnaire
Participation in the Emory Healthy Brain Study begins with the completion of our Health History Questionnaire. This data collection process helps us better understand how we age and age-related diseases. It’s not uncommon for study participants to report a variety of health conditions, and we consider these factors when looking for predictive biomarkers.
Do you have a family history of Alzheimer’s Disease (biological mother, father or sibling)?
Have you ever been diagnosed with High Blood Pressure?
Have you ever been diagnosed with High Cholesterol?
Participant Body Mass Index
Participants by Location
Because participation in the Emory Healthy Brain Study involves an on-site visit once every two years, it is not surprising that most of our participants are from the metro-Atlanta area. What might come as a surprise is how far some people travel to participate in our study, some traveling for hours across hundreds of miles. There is no doubt, whether it’s a few miles or a few hundred miles, we have some of the most dedicated participants who are helping us lead the fight against Alzheimer’s.
3D Printing from the MRI
This past year several of our team members undertook a unique challenge: create an accurately 3D printed model of the brain using data collected from an MRI scan. We are excited to announce the project has been a success and we are now able to provide each participant who completes an MRI with a 3D model of their brain. The process took 5 months of designing and testing various materials and fill configurations. The end result is a model that's scaled to 33% of the actual size and printed with a precision of ±0.1mm-0.2mm. Since it takes approximately 4 hours to print each one, we created a time lapse to show you the process.
Participant Story:Michael Edwards
With a family history of dementia and witnessing the affects it has on others, Michael knew it was time to do his part in the fight against it.
Procedures
The variety of measurements and samples collected provide us with a wealth of data points to examine.
What’s Changed?
If it's been a while since your last visit with us, you might notice some things have changed. When the COVID-19 outbreak began we shifted to a more digital model where applicable. Now that we have resumed in-person visits, we are using a combination of virtual and in-person methods to conduct research. We begin by completing the consent and cognitive testing virtually via Zoom. Following the virtual visit, the rest is broken into two separate visits: fasting and MRI. The fasting visit lasts approximately 2 hours and consists of measuring vital signs, cardiovascular assessments, a lumbar puncture, and a blood draw. The MRI visit takes up to 1.5 hours to complete. One of our research coordinators will contact you when it's time to schedule your visit.
Breakdown of Biospecimens and Tests
Cognitive
In the Emory Healthy Brain Study, we administer various cognitive and neuropsychological tests that measure aspects of brain function, including memory, language, visuospatial skills, attention, and higher-order thinking. These tests are validated measures used in both research and clinical practice:
- to help characterize individual cognitive abilities, such as strengths and weaknesses
- to monitor changes in functioning that may occur during the process of normal aging or as a result of disease or injury
- to better understand brain-behavior relationships
Repeated assessments using these same measures can help us understand the changes that occur across the developmental lifespan of mid-life and older adults. When we compare test scores to other aspects of health, we can elucidate the consequences of certain genetic and lifestyle practices, helping us to identify fruitful areas for health intervention and treatment.
We have also made some recent additions to our cognitive testing battery. A year into the study, we were given permission to use a non-published research instrument to study learning and memory that has strong relationships to Alzheimer’s disease pathology.
Questionnaires
Health History Questionnaire
We ask all study participants to complete the Health History Questionnaire (HHQ) when they first enroll in our study. The information that participants provide is critical for our efforts to study aging as part of the Emory Healthy Aging Study, and, more specifically, cognitive aging as part of the Emory Healthy Brain Study. In addition to basic demographic information, the information participants provide about their lifestyle, medical history, family history, and other life experiences, is invaluable. We are learning more about how daily lifestyle choices, like smoking, physical activity, and the foods we eat, influence the risk of developing Alzheimer’s disease. Knowing about a participant’s past medical and family medical history helps researchers to understand how different medical conditions in individuals and families influence the development of Alzheimer’s disease. Other information provided by the HHQ offers researchers additional avenues to identify potential factors that either increase or decrease the chances of developing Alzheimer’s disease.
PHQ-8 and GAD-7
In older adults, depression, anxiety and Alzheimer’s disease are often seen together, but the nature of the relationship is not clear. Determining how depression and anxiety are related to the development of Alzheimer’s disease in its earliest stages will clarify whether depression and anxiety simply co-occur with Alzheimer’s disease, or whether they act to increase the chances of developing Alzheimer’s disease.
We are learning more about how daily lifestyle choices, like smoking, physical activity, and the foods we eat, influence the risk of developing Alzheimer’s disease.
Diet Questionnaire
Dietary habits can influence the chances of developing risk factors for Alzheimer’s disease, as well as Alzheimer’s disease itself. In conjunction with other data collected during the EHBS, dietary data will allow researchers to study how nutrients and dietary patterns are related to the earliest stages of Alzheimer’s disease.
Post-Visit Survey
We are currently in our third year of the study. Many advancements have already been made to our process, thanks in large part to comments from our constituents. However, we are continually looking to improve the experience for current and new participants. This survey, which was implemented after our first year, is a way for us to gather constructive feedback about what a visit really looks like from their perspective, and do everything in our power to make it enjoyable!
Cardio
One of the focuses of our center is better understanding the interface between the brain and heart. There is no question our cardiovascular health impacts a lot of different systems within our bodies and is why it receives as much attention as it does. What is not as well understood are the impacts our cardiovascular health has on our brains, more specifically its role in neurodegeneration and diseases like Alzheimer’s. Anyone who has seen a primary care physician is probably familiar with the routine cardio testing done. Your pulse and blood pressure are tests we’ve become accustomed to, but we’re taking it even further. For example, we now know that hypertension is more than just a blood pressure problem – there are a lot of different factors that affect this. In the Emory Healthy Brain Study, we conduct several additional cardiovascular tests:
Arterial Pulse Wave Analysis
This is also known as the arterial stiffness test, and it is used to measure the stiffness of your blood vessels. This also measures your carotid pulse.
Flow-Mediated Dilation & Endo PAT
This test measures the blood flow in your arm using an ultrasound.
Carotid Intima-Media Thickness (CIMT)
This scan is a non-invasive test that scans the carotid arteries in the neck to detect plaque buildup and increased thickness of the artery wall.
Electrocardiogram (ECG)
This test is a standard measurement of your heartbeat and heart rhythm.
These tests allow us to look at heart health from multiple dimensions. For example, we know microcirculatory disfunction increases the risk of heart disease. By using the Endo PAT test, we are able to see how much micro vessels have dilated and are now seeking to understand how this translates into the development of dementia.
We do not yet know which of these tests will be the most important, but we are comprehensively looking at cardiovascular health holistically to determine the what elements are impacting our brain health. By measuring traditional risk factors and taking it one step further with lab-specific measurements, we hope to increase our ability to predict the development of Alzheimer’s disease.
Blood and Cerebral Spinal Fluid (CSF) Collection
The primary goal of the Emory Healthy Brain Study is to find new biological markers to predict Alzheimer’s disease. To help achieve that goal, we ask study participants to provide blood, cerebrospinal fluid, and microbiome samples Each of these samples provides unique information about a person’s health.
Blood
Many substances can be measured in blood, which makes blood samples critical for research aimed at understanding Alzheimer’s disease. The information gained from blood samples can give insight into inflammation, infection, cholesterol levels, kidney and liver function, and sometimes help to predict the course of disease. We hope to find a blood test or collection of blood tests that will allow us to predict Alzheimer’s disease.
Cerebrospinal Fluid (CSF)
Just as we are looking for a blood marker for Alzheimer’s disease, we are also looking for new markers in cerebrospinal fluid (CSF) that can predict Alzheimer’s disease. CSF is produced by the brain and bathes the entire brain and spinal cord. CSF is special because it allows clinicians and researchers to detect and measure substances that tell us about brain health that cannot be measured in blood.
A portion of each participant’s blood and CSF samples are used up front for standard measures that a primary care doctor might also check, like blood cell counts, as well as standard Alzheimer’s disease research measures. These inform researchers about the overall health of participants and help understand new research results. Another portion of each sample is stored in a secure freezer and catalogued for future research as we continue to make new discoveries.
Research
By identifying predictors of Alzheimer’s disease, we may be able to slow, treat, or even prevent it someday. Supporting the researchers is a dedicated team that leads participant visits, collects samples, and participates in outreach.
Aducanumab
This past year the U.S. Food and Drug Administration (FDA) provided accelerate approval for the use of Aducanumab (Aduhelm) as a treatment for Alzheimer's disease. Since the announcement, there have been a lot of questions regarding the drug. If you want to learn more about Aducanumab, click the button below to access our Adcuanumab FAQ sheet.
Alzheimer’s Disease vs. Dementia
Dementia is a generic term for severe deterioration of memory and other cognitive abilities. It can be caused by many different disorders that impair the function of the brain. Alzheimer’s disease is the most common form of dementia, and accounts for 60-80% of cases.1
The development of Alzheimer’s disease should not be considered a part of “normal aging”, although advanced age is the greatest risk factor. The most common symptom in the beginning is trouble remembering new information. Other symptoms include mood and behavior changes, confusion, disorientation, and eventually patients have trouble speaking and walking. As the disease progresses, the severity of symptoms increases, and eventually leads to death.
When a patient with cognitive problems goes to the doctor, the first thing the doctor does is rule out other possible causes, some of which can be treated (such as infections, interactions of certain medications, vitamin deficiencies). When all other possible causes have been ruled out, a diagnosis of Alzheimer’s disease is made.
Alzheimer’s disease is the most common form of dementia, and accounts for 60-80% of cases.
Physical Changes in the Brain
Evidence currently indicates that the root cause of Alzheimer’s is the accumulation of plaques and tangles in the brain. Plaques are created when beta-amyloid protein collects in between nerve cells in the brain, and tangles are a result of tau protein build-up within cells. This change in structure causes many other things to go wrong, and eventually leads to the deterioration of the nerve cells and their connections, which in turn causes dementia.
Current clinical trials are designed to prevent beta-amyloid and tau from accumulating, and to preserve the function of nerve cells. There are many potential ways to approach this therapeutically, but we don’t yet know which ones are most likely to lead to successful treatments; this is why we need a variety of clinical trials.
Enrichment Criteria
Family History
Individuals who have a first-degree relative who has been diagnosed with Alzheimer’s disease are more likely to develop the disease as well. It’s also important to note that multiple family members with a diagnosis increases this risk even more. Typically, if a disease is seen in multiple generations of a family, there may be a genetic component contributing to its development. Researchers have found several genes that increase the risk of Alzheimer’s. Apolipoprotein E-e4, or APOE-e4, is the first gene identified. These so-called “risk genes” only increase the chances, but do not allow physicians and researchers to definitively say that an individual will develop the disease.
Cardiovascular Disease and Diabetes
If you think about the way the body is designed, it’s not hard to imagine that cardiovascular health could have a large impact on the development of Alzheimer’s disease. The heart is responsible for pumping oxygenated blood to our organs, and the brain has one of the densest concentrations of blood vessels in the body. Thus, when a conditions compromises this ability, either by damaging the heart or the blood vessels, the brain doesn’t receive as much oxygen and function decreases. These conditions, including heart disease, diabetes, stroke, high blood pressure, and high cholesterol, increase the risk of developing Alzheimer’s disease. Studies have also suggested that the presence of plaques and tangles is more likely to lead to Alzheimer’s disease if the blood vessels have been previously damaged.
African Americans and Latinos
According to the Alzheimer’s Association, African Americans are twice as likely to develop Alzheimer’s disease when compared to Caucasians, and those individuals with Latino ethnicity are one-and-a-half times more likely. It is extremely important for the quality and accuracy of our data and conclusions that we include participants from all different backgrounds in this study.
Sources
1. What is Alzheimer’s? (2007, January 7). Retrieved May 1, 2018, from https://www.alz.org/alzheimers_disease_what_is_alzheimers.asp
Meet the Study Team
