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JANUARY 2024

Why Fully Enrolled Is Just the Beginning

Happy New Year! So many people save their gratitude for the end of the year, but
we here at All of Us want to start off with a big Thank You. We appreciate your
taking part in this program and being our partner as we speed up health
research.

It can't be said enough. Participants like you are helping the All of Us
Research Program build a big, diverse collection of health data. But we don't
point out enough how we try to keep you informed. There's a graphic in each
newsletter called All of Us By the Numbers. Have you ever looked at it closely?

The graphic keeps track of three groups — those who have consented to be in the
program, people who are fully enrolled, and researchers. Consented means you've
created an account and completed the initial consent to join the program. On the
other end of the participation spectrum is fully enrolled. Fully enrolled is an
idea that goes back to the start of our program. It is important for our goal of
improving the future of health. It also means that you’re eligible to receive
DNA results, if you also say “Yes” to the Consent to Get DNA Results when you're
asked later. 

Steps, Choices, and Activities 

At the start of All of Us, we came up with the types of information we think
will most help researchers make discoveries. We wanted to include information
about biology, environment, and lifestyle, three key areas that affect our
health. To do that, we created activities that help us learn more about them.
Doing those activities will make you fully enrolled.

Those activities include: 

 * Agreeing to share your electronic health records,
 * Completing our first three surveys, and
 * Providing physical measurements and samples (blood or saliva, and urine).

Remember, as a participant, you get to choose how much you want to be involved.
If you decide to offer as much of your health data as you can, you’ll probably
end up being fully enrolled. If you decide you only want to share certain
things, you’re still contributing to research. 

Looking to the Future

You might think that a term like “fully enrolled” means you've done everything.
Really, it's only the beginning. All of Us has grown since we started in 2018.
We continue to add new activities that can paint a more complete picture of your
health. 

There are other activities you can complete that aren’t part of being fully
enrolled. Those activities include sharing Fitbit data and answering new surveys
about mental health and social factors in your life. They include activities
that test how your brain works. It includes an opportunity to learn more about
how nutrition affects our health. In the coming years, we’ll develop new ways
for you to be part of the program’s work. 

We might also ask you to do an activity again, to see if or how things have
changed for you. We might ask you to donate another sample or give other
measurements in the future. This kind of updated information helps researchers
study if changes in your life cause changes in your health over time. 

All of Us data has already led to exciting new discoveries. The information
you’ve shared — whether you’re fully enrolled or not — is helping to create a
healthier future for everyone. We’re so grateful for your participation. And
we’re excited to continue our partnership and provide new ways to improve health
and research.

All of Us By the Numbers

More than 755,000 participants who have completed the consent process.


755,000

More than 519,000 participants fully enrolled.*


519,000

More than 8,450 research projects are using All of Us data.


8,450

*Fully enrolled participants are those who have shared their health information
with All of Us, including giving blood and urine or saliva samples.

Spotlight: All of Us Unites Early Career and Seasoned Researchers to Study
Common Eye Disease


January is Glaucoma Awareness Month. Glaucoma is a leading cause of vision loss
and blindness. Nearly 3 million Americans have it. Half the people with glaucoma
don’t even know they have it. It can have early warning signs, such as
blurriness or discomfort. But most people don’t have those symptoms.
 
Glaucoma researchers are now partnering with All of Us to study the disease in a
diverse population. Some are early career researchers, like Kristy Yoo and Kiana
Tavakoli, M.D.  
 
To help them thrive, the program offers opportunities to partner with more
experienced researchers. One of those is Sally Baxter, M.D., M.Sc., an expert in
glaucoma research at the University of California, San Diego (UCSD). She runs
her own lab there, too. Dr. Baxter studies ways to predict who is at a greater
risk for serious vision loss. She published one of the first papers using All of
Us data in 2021. And she’s a frequent All of Us collaborator. Dr. Baxter worked
with both Ms. Yoo and Dr. Tavakoli on their glaucoma research using All of Us
data. 

Eyeing Genes and Depression 
 
Dr. Tavakoli grew up in Tehran, Iran. She also went to medical school there. Her
research interests turned to glaucoma when her grandmother was diagnosed with
it. She knew she wanted to work abroad, where there are more research
opportunities. So she was thrilled when she landed a spot as a postdoctoral
fellow in Dr. Baxter’s lab.  
 
Now Dr. Tavakoli uses computers to study how genetics relate to eye disease. One
of the people she works with is Tiffany Amariuta, M.D., Ph.D. Dr. Amariuta is a
statistical geneticist who runs her own lab. She helps Dr. Tavakoli understand
this complicated field of science. Plus, Dr. Tavakoli always has Dr. Baxter’s
support.  
 
“She’s the best mentor you can ask for,” said Dr. Tavakoli. “She supports me in
my research, and even in my personal life. And when I fail at something, she
helps me think it through and find the solution myself. Sometimes I wonder if
she’s a superhero.” 
 
For her All of Us research, Dr. Tavakoli paired up with Jordan Smoller, M.D.
He’s the associate chief of research in the psychiatry department at
Massachusetts General Hospital.  
 
Dr. Tavakoli and Dr. Smoller were intrigued by a potential link between glaucoma
and depression. Few had explored it before. Using All of Us data and advised by
Dr. Amariuta, they found that there is indeed a link. They learned that people
diagnosed with glaucoma are more prone to becoming depressed. And those affected
by depression are more likely to develop glaucoma.  
 
The pair are now looking for genes that might change the risk of depression and
glaucoma. They also want to know if those conditions might have any overlap. If
they find a connection, it could lead to new ways of preventing glaucoma.  
 
Dr. Tavakoli said the All of Us database is invaluable. Its size and diversity
make studies like hers and Dr. Smoller’s possible. 
 
“My favorite thing is being able to help the world — to find out new things that
help people improve their lives. And to do it all through science,” Dr. Tavakoli
said. “The more participants who are involved with All of Us, the more it helps
us find new insights and treatments and health outcomes. The people who
participate are the most important part of our work.” 
 
Pressure on the Nerve 
 
Ms. Yoo is a medical student at the University of Southern California’s (USC's)
Keck School of Medicine. A Korean American, she grew up in a family of engineers
in Southern California. 

Today she works with Benjamin Xu, M.D., Ph.D. He specializes in glaucoma
research at the USC Roski Eye Institute. 
 
Ms. Yoo compared normal healthy eyes to a sink with the faucet always on. Fluid
flows through the eyes and nourishes them. But poor drainage creates pressure.
That can damage the optic nerve. “To prevent overflow of the sink, we need to
have good drainage," she said. 
 
Most treatments for glaucoma aim to reduce pressure on the eye. “You can either
turn down the faucet or improve the drains,” said Ms. Yoo. “Nearly every way we
treat glaucoma does one or the other.”  

Then Ms. Yoo and Dr. Xu came across some intriguing new research. It suggested
glaucoma patients can reduce both their eye pressure and their stress with
relaxation exercises. Researchers already knew that being stressed out for a
long time can increase your risk of heart disease, brain disease, and much more.
But less was known about how stress affects your eyes. 

Ms. Yoo and Dr. Xu were curious. They wanted to learn more about how the
build-up of stress might contribute to glaucoma. And whether glaucoma patients
have more stress before their diagnosis.  
 
Ms. Yoo and Dr. Xu enlisted Dr. Baxter’s expertise and familiarity with All of
Us. The team is looking closely at long-term stress and glaucoma. They’re hoping
to show a clear relationship between the two conditions. 

Next, Ms. Yoo and Dr. Xu will explore how chronic stress relates to other eye
conditions. They hope that what they learned using All of Us data will help them
learn how to lower the risk of glaucoma without surgery or medical treatment.  
 
“It’s so rewarding to work with these young researchers,” Dr. Baxter said.
“Watching them advance our understanding of glaucoma using the All of Us
database is thrilling. I’m proud to help a new generation of scientists
contribute to this important research.” 

Understanding Research: Why Blood Is Vital for All of Us and Your Community


A new year of new health discoveries is well underway.

All of Us participants help fuel this work by sharing health information. You
can also share samples, which includes giving blood.

January is National Blood Donors Month. Blood can be a lifesaving gift all year
round, but why is it also important for research? Researchers use blood samples
every day to learn more about health and disease. 

Let’s take a closer look at how that’s done. 

What is in Your Blood?

Blood is a complex mix of both liquid and solid parts. If you donate blood to
All of Us, it’s sent to our biobank for storage. There, your sample is separated
into these liquids and solids — all of which have unique purposes for research.
Those parts include: 

 * Serum: A liquid that can be used to measure compounds — sodium, glucose,
   hormones — in your body. Serum is also used to determine your blood type.
 * Plasma: A liquid with many of the same compounds as serum. Plasma also has
   proteins that cause blood to clot.
 * Blood Cells: Your blood contains white and red blood cells. White blood cells
   help your body fight infections. Red blood cells help oxygen travel
   throughout your body. They’re also what gives blood its red color.
 * DNA: DNA holds our genetic information. It serves as a blueprint for how our
   bodies grow and function. DNA can be taken from cells in your blood, or it
   can float around in the liquid parts of blood. 

Unseparated blood drawn straight from your veins — known as whole blood — is
also stored at our biobank. The whole blood can be saved as a backup in case a
sample is damaged, or a test needs to be rerun. 

(Your) Blood + (Researcher) Sweat + (Hopefully No) Tears = Research

The different parts of blood can support different kinds of research. Lots of
important work is being done by researchers using blood samples from All of Us
participants. 

For example, serum can show signs of infection through the presence of
antibodies or bacteria.  Researchers were able to identify some of the earliest
cases of COVID-19 in the United States by finding antibodies in serum donated by
All of Us participants.

And DNA taken from blood samples has led to almost 250,000 whole genome
sequences for research. Researchers can use these sequences to learn how genetic
variants are related to health and disease — a key to a future of better
precision medicine.

There are countless other ways blood can and is being used for research. It can
measure how well medicines are received by the body. It can indicate the health
of organs such as the heart and the lungs. And blood is the focus of research
into new treatments for cancers and diseases. 

The Gift of Giving Blood

Donating a blood sample to All of Us is a great way to contribute to research.
And you could learn about your own health, too. All of Us can provide DNA
results about your risk for certain hereditary diseases. The program can also
tell you how your genes may affect how your body processes certain medicines.
All of this information comes from the DNA within a blood sample. 

You may be wondering: How much blood is needed for all of this powerful
research? The answer may be less than you think. All of Us collects only about 3
tablespoons of blood. Compare that to a donation at a blood drive, which
requires 32 tablespoons, or 2 cups of blood. 

Of course, donating to a blood drive is also a great thing to do. According to
the National Heart, Lung, and Blood Institute, a single blood donation can save
up to three lives.  And after the holidays, blood drives especially need
donations. The Red Cross says fewer people donate blood during the holidays due
to the busyness of the season, school closures, winter sicknesses, and bad
weather. 

If you can, thank you for donating blood — whether it’s for research or for a
blood drive. Your donation can be a gift to your community, now and maybe for
generations to come.

Voices of All of Us: Tribal Traditions Inspire Miguel Flores Jr. to Cultivate
Collaboration and Continuity


Miguel Flores Jr. unites worlds. 

For 5 years he’s helped the All of Us Research Program engage with Tribal
communities. For 30 years he’s shown governments, schools, and Tribal Nations
how to build partnerships and awareness. His constant goal is to create a better
understanding on all sides. 

Flores is a substance-abuse counselor, traditional healer, and community leader
in Tucson, Arizona. He was raised there in his family’s Indigenous Mexican
traditions. But he also belongs to the Pascua Yaqui Tribe and the Tohono O’odham
Nation. Flores speaks English, Spanish, Yaqui, and O’odham.

Those languages and traditions inspire Flores and his work. Flores became
involved with All of Us in 2018. He advised the University of Arizona at Tucson
then on how to respectfully reach out to Indigenous communities.

Now he’s a member of the All of Us Steering Committee. There he continues to
help guide the program.

“Flores’s work has let All of Us create a more inclusive program to better meet
the needs of Tribal Nations,” said Michael Hahn. Hahn is the All of Us Tribal
Engagement and Outreach Branch chief. “We are committed to working with
Indigenous communities to advance medical research that can benefit all of us.”

In September 2023, All of Us awarded $1.5 million to the University of Arizona
(and other institutions). The funds will help Tribal Nations advance health
equity and precision medicine. Now the university is developing a tool to
measure when the community is ready to participate in the program. Flores said
respecting tribal sovereignty is the key to boosting readiness.

“If we are open and honest, All of Us can bring a lot of benefits to Tribal
communities,” Flores said. But it “takes time. We need to build long-standing
relationships.”

Generations of Caring

Flores knows about the importance of relationships. He’s a fourth-generation
Tribal member. His maternal great-grandmother fled Mexico on foot. She left when
the government began deporting Indigenous members from their village. In Arizona
she was a Pascua Yaqui Tribal midwife from the 1920s to the ’70s. She passed
away in 1992, at the age of 104. When she died, Tucson’s Kino Community Hospital
named its labor and delivery room after her.

Her legacy lives on in her great-grandson. Flores was inspired by her resilience
and community commitment.

Flores was the first in his family to finish high school and go to college. On
campus, he joined a program called Y.E.S. (Youth Enrichment Services). It
offered after-school tutoring to children in kindergarten through sixth grade.
That’s where Flores’s passion for counseling began.

“I had a good rapport with the kids,” Flores said. “It really changed my life
course.” 

Y.E.S. trained him to merge art and cultural traditions. He also learned ways to
prevent violence. Later, Flores pursued mentoring jobs with the Tohono O’odham
Nation. He got a state license to be an independent substance-abuse counselor.
He was also certified as a treatment specialist for sex offenders. Then he
opened his own counseling business.

Patricia S. Nye, M.D., is a retired captain in the U.S. Public Health Service.
For 18 years she directed behavioral health at the Tucson Area Indian Health
Service office. Flores worked under her there. She said he’s a great counselor
because he learns from his own experiences. His “profound understanding and
respect for his own background” makes him who he is.

“He has known from childhood that he possesses a gift and the responsibility to
use his gift for healing and wholeness,” she once wrote of him.

A Healer and Leader

Flores educates his communities about health and health care. He tells them why
medical research is important. And he explains why new research needs to include
them. Then he helps All of Us program leaders talk with Tribal communities in
ways that respect their cultures and customs.

“Generational trauma from research has had a negative impact on our
communities,” Flores said. “Many broken promises, broken treaties.”

But Flores said the ongoing talks are starting to pay off. Government and Tribal
leaders are gaining a better understanding of the other’s perspectives. 

“Sometimes,” Flores said, “we have two different philosophies of how things get
understood — two different timeframes.”

Flores’s role is to develop a bond between the two groups. He helps build a
shared understanding and a path forward. 

Yet challenges remain. For example, All of Us participants who share a blood or
saliva sample can ask to see their own genetic health-related results. These
show if the person’s DNA and medication history put them at greater risk of
hereditary diseases. But different groups perceive the DNA samples themselves
very differently.

“A lot of researchers just see DNA as a sample,” Flores said. “As Indigenous
people, we see it as a gift. We’re giving you part of our life.”

Now 30 years into his career, Flores remains committed to teaching Native
customs.

“I have always been proud of who I am and where I am from,” he said. “It’s my
job to help people understand the significance, the meaning.”

To learn more about All of Us’ activities with Indigenous and Tribal
communities,
visit https://allofus.nih.gov/about/diversity-and-inclusion/tribal-engagement.”

What’s New with All of Us


All of Us Continues Sharing DNA Results

All of Us started sharing health-related DNA results to participants at the end
of 2022. We started with participants who had shared samples the earliest.

Just over a year later, we have invited more than 208,000 participants to tell
us if they want their health-related DNA reports. Each week, we send out up to
5,000 invitations. 

Keep an eye on your email or text messages for your invite. For more information
on how to receive DNA results, view our Genomics page.

NIH Institutes Award Funding to Several Research Projects That Use All of Us
Data

Seven hundred and fifty thousand people like you have signed up to share your
data to speed up health research. In this newsletter, we like to share stories
of the kinds of research that the data allows. Your information is valuable, and
we want to be sure it powers as much discovery as it can. One way to do that is
by improving the tools that researchers use to explore the data. 

Last November, All of Us and ten NIH institutes, centers, and offices
announced research projects to do just that. Some of the projects will study
issues like heart disease and chronic pain using All of Us data. But others will
develop new tools to help researchers use the data.

The 26 projects will last for two years.


SUBSCRIBE TO UPDATES

We’re just getting started. Sign up to get program updates and follow our
progress. SUBSCRIBE
 * January 2024
 * All of Us By the Numbers
 * Spotlight: All of Us Unites Early Career and Seasoned Researchers to Study
   Common Eye Disease
 * Understanding Research: Why Blood Is Vital for All of Us and Your Community
 * Voices of All of Us: Tribal Traditions Inspire Miguel Flores Jr. to Cultivate
   Collaboration and Continuity
 * What’s New with All of Us
 * Return to Top


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