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This month, the All of Us Research Program turned 5. Thanks to our participants, we’ve come a long way in that time.
We have much to celebrate. And we have a lot to look forward to as we keep growing. Let’s look at what All of Us has done so far and what we’re working on now.
All of Us Milestones
All of Us officially launched its enrollment of participants on May 6, 2018. The program started with the promise to speed up health research and include groups that have been left out in the past. Since then, we have done some amazing things together:
Planning for the Future: The Data Roadmap
All of Us has also made progress in research. And we’re finding new ways to keep making new discoveries.
Since the program’s launch, researchers have found the number of daily steps needed for better health. They’ve looked at heart health in groups that have not been well studied in the past. And they helped us learn more about COVID-19.
This and other research is thanks to your involvement, lots of planning, and lots of interest from the researcher community. Researchers registered with the program have more than 4,350 research projects using participant data.
As the program grows over the next five years (and hopefully beyond), we will keep improving our infrastructure and tools like the Researcher Workbench. We also want our participants to continue sharing health information with us so that researchers can continue to make discoveries that benefit all of us. That means we need to make it easy for you to share that information, if you want to. We also need to make sure we’re collecting data that is most useful to researchers to help them make discoveries.
Just like we will always tell you when new opportunities to share information come up, we also tell researchers. We let them know when they can expect to see new kinds of data from the program. We call it our “Data Roadmap.” We share it to give researchers time to plan their projects. You can view the roadmap here.
We can also begin to think about the kinds of scientific questions that researchers would like to study and what new data types they would need to answer them. Planning research in this way can help researchers focus their studies on certain diseases or health topics. They can also make sure to include people who have been left out of medical research in the past. And discoveries from that research could be used to improve health for everyone.
You are our partners in research and it’s important you know what data we would like to collect. And you will always be able to choose whether you want to donate more data in the future.
From Promise to Progress
All of Us has grown a lot over the past five years. And we want to keep moving from promise to progress in speeding up health research. To accomplish this goal, we need to keep supporting researchers and our participants. The Data Roadmap can help by guiding researchers as we keep growing. And we redesigned our participant homepage so that information about All of Us is clearer for new participants and those interested in joining.
There is a lot to look forward to from All of Us. For example, the program will soon begin enrolling children and adolescents. Health information from these groups will allow researchers to study health and disease across the lifespan. We look forward to sharing more of these plans and other new developments as they come.
Thank you for your role in our five-year anniversary. We look forward to many more years of partnership. Your participation is key to keeping All of Us moving forward in making discoveries that can improve health for everyone.
More than 635,000 participants who have completed the consent process.
More than 444,000 participants fully enrolled.*
More than 4,350 research projects are using All of Us data.
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
Gathering around a birthday cake gets people thinking back to the early years. Now that All of Us is five years old, let's look back at one of our first sites to see how it started. And then we’ll look at one of our newest sites to see how much All of Us has grown.
Laying the Groundwork in Pennsylvania
One of our very first partners was All of Us Pennsylvania at the University of Pittsburgh. They even signed up the first All of Us participant. They started enrolling participants in the greater Pittsburgh area. Now, they run sites throughout the state.
In early May 2017, they established their first enrollment site. It was a year before the official launch. By the time the pandemic hit, All of Us Pennsylvania had reached about 20,000 participants. And they had also opened their first storefront site in the heart of Pittsburgh’s bustling Innovation District.
Now, All of Us Pennsylvania has enlisted almost twice as many participants. This is even after having to reduce in-person contact during the pandemic. They have dozens of locations across Pennsylvania where people can enroll. They even have pop-ups. Every year, they aim to bring in more than 6,000 new participants.
All of Us Pennsylvania asks people who are in the program to share their story with friends and family. Telling others what makes being part of All of Us special might inspire them to join. All of Us Pennsylvania is sending postcards to help participants invite others.
“All of our own personal histories, all of our lives, are stories in themselves,” said Rob Morlino, executive director of communications at All of Us Pennsylvania. “When you tell us about yourselves by taking surveys, when you share a DNA sample, or even when you connect your Fitbit to the program, those stories will help researchers better understand the narrative of your health and heritage.”
Expanding into Puerto Rico
The most recent sites to open are in Puerto Rico. Las Piedras is a town in a mountainous area on the eastern side of the island. It is home to COSSMA, a partner that joined All of Us last year. A half-hour northwest of COSSMA, the Comprehensive Cancer Center/Centro Comprensivo de Cáncer in San Juan also enrolls All of Us participants.
The Puerto Rico sites stand out because everyone speaks Spanish on the island. “We are 100 percent Hispanic,” said Linda Pérez Laras, Dr.PH., M.Sc., who runs the COSSMA effort.
But Spanish isn't monolithic.
Puerto Ricans have a dappled heritage. The population goes back 500 years. For 400 years, they were a part of Spain. The last 100 years, they have been a part of the United States. They are a mix of people from Spain, Africa, the Americas, Europe, Asia, the Caribbean, and the Indigenous Taino. The COSSMA program works hard to create materials for Spanish speakers from all over the world. But they also include local words and meanings from Puerto Rico.
Puerto Rico has unique challenges due to its size and location. It is a small island with 3 million people. It doesn’t have the infrastructure that many cities in the mainland United States do.
The Puerto Rican sites enroll a handful of participants three times a week. But they must carefully time when they take blood samples from participants. Traffic can affect when FedEx comes to pick up samples. Donated blood must get to the program’s Biobank in Minnesota within a day or two in good enough quality for the program. If the transport truck is early and leaves too soon, the staff might miss their chance to ship the samples. Logistics like this limit how late in the day COSSMA staff can enroll participants.
Dr. Pérez is excited about learning how Puerto Ricans’ health compares to that of other Hispanic communities. This includes Puerto Ricans who live in New York, the largest group outside of the territory. The island can be a stressful place to live. It has seen two major hurricanes, a major earthquake, and the COVID-19 pandemic hit in rapid succession. The islanders have endured many challenges. The people are resilient. But some regions haven’t fully recovered yet.
“How has that affected our health?” said Dr. Pérez. “That’s one reason why so many researchers are eager to see All of Us enroll Puerto Ricans.”
Mr. Morlino agrees that All of Us can help us understand the patchwork of our health. "One of the great things about this program is that it's not just based on DNA," he said. "It's about looking at DNA with social determinants of health and other environmental factors. It's pretty holistic. It's looking at the whole person."
Mr. Morlino and Dr. Pérez hope the program keeps growing long beyond this anniversary. "If we're able to get a million people in the program, who mirror our diversity and lived experiences, that will go a long way toward telling us why we get sick or stay healthy," said Mr. Morlino.
You can choose to donate all kinds of data as an All of Us participant. You can fill out surveys, share electronic health records, let us know your height and weight, and link Fitbit data. You can also donate blood or saliva and urine.
It takes time for All of Us to process all of this information from hundreds of thousands of participants. As a result, we add to the program’s database in batches called data releases. Our latest data release was in April. And it’s an important one for researchers and participants.
More Data on More Populations
Since the April data release, the Researcher Workbench includes 245,000 whole genome sequences from participant DNA samples. Whole genome sequences contain information about a person’s genetic makeup.
With this new data, All of Us researchers have information from more than 413,450 participants. About 45% of this data comes from participants who identify with a racial or ethnic group that has been left out of research in the past.
Other research programs gathered only about 5% of their data from these groups. This means that All of Us is the most diverse database of its kind.
Diverse data lets researchers learn about individual differences within a population. They can look for differences, or variants, in DNA that might be related to disease. And those discoveries can apply to a broad range of people. Discoveries can show that some illnesses may impact certain groups more than others. One example is a recent study on the high rates of anxiety and depression among people with blindness and low vision during the COVID-19 pandemic.
More Types of Data
Researchers study a genome by putting its individual components, called base pairs, in order. An entire human genome is more than 3 billion base pairs. Because it’s so long, the genome must be split into smaller pieces. These pieces are then put together to make a whole genome sequence.
This data release has added a new type of data to the All of Us database called a long-read sequence. Most sequences range from 75-400 base pairs. In long-read sequences, researchers have a bigger piece of the genome at a time. These bigger pieces contain about 1 billion base pairs. This is almost one-third of the length of a whole genome sequence.
Long-read sequences can help researchers find more complex variants related to health and disease that they normally could not study. All of Us researchers now have 1,000 of these long-read sequences available to them. This data will let researchers take a much closer look at the genome.
Another new data type in this release is sleep data from Fitbit devices. Participants can choose to link their Fitbit data with All of Us. That gives the program information about activity, step count, and heart rate. And this data can go back many years depending on how long someone has had their Fitbit. Now, researchers can also study how long-term sleep patterns may be related to overall health and disease. If you want to link your wearable device to your All of Us account, log in today.
Future Data Donations and Releases
There are lots of exciting ways to donate data. And more are coming in the future.
Right now, participants can join a new study. The National Institutes of Health recently launched the Nutrition for Precision Health study. All of Us participants from Alabama, California, Illinois, Louisiana, Massachusetts, and North Carolina can join it. Participants will answer surveys about what they eat. They will also give samples and eat test meals so that researchers can study how their bodies process food. The data will help researchers make food plans that are based on people’s unique needs. And the data will become part of the All of Us database. You can visit the study’s website to learn more.
In the coming months, All of Us also plans to launch ways for participants to share data about mental health and behavior. There will be two surveys asking participants about their mental health and well-being. Participants will also be able to do Exploring the Mind activities that test attention span and how we make decisions. This data will help inform new studies on mental wellness.
We’ll always let you know when you can donate more data. You can choose whether or not to participate in new activities or studies. And All of Us will protect your data so that researchers will not know who you are from the information you share. If you want to learn more about this data release and future releases, you can see program announcements and news at our website.
Thank you for making these releases possible. The data you have shared will let researchers study our DNA, the foods we eat, and our daily lives. This information could help them better understand overall health and disease.
Precision medicine is personal for All of Us Chief Executive Officer Josh Denny, M.D., M.S., and his wife Carolyn Denny, MBA. A family history of cystic fibrosis spurred Josh to medical school. As a young couple, they had a child with a rare genetic condition and few treatments. This energized the couple's vow to help speed up health research for all.
“Our experiences have been motivating,” Josh said. “We know researchers can learn from large datasets to improve care for everyone.”
Josh knew his father endured much loss from cystic fibrosis, a genetic disease. Four of his father's siblings died as children from it. It affects the lungs, pancreas, and other organs and gets progressively worse.
“I’ve always been close to my grandmother, so I grew up hearing stories about the children she had lost,” Josh said. “My dad had memories of the last trip to the hospital with one of his siblings in his arms. You cannot quantify the pain that kind of loss causes. It leaves an indelible mark."
“That’s part of why I became a doctor,” he added. “I’ve always felt called to do something that helps people, especially where medicine doesn’t have any answers yet. We need more answers, treatments, cures.”
Josh went to Vanderbilt University School of Medicine in Nashville, Tennessee. There he saw a variety of patients with both common and rare diseases. He treated some patients for whom the typical treatment didn’t work. Some had conditions that went undetected for years. Others had rare or unusually severe symptoms.
He applied his training to his own family after Carolyn gave birth to their second son in 2009. Within a few weeks after their son was born, both parents knew something was wrong. Their son came down with a severe case of viral meningitis. Other health issues followed.
The Dennys quickly ruled out cystic fibrosis through testing, a relief. But the cause remained elusive. After years of consulting with specialists, their son was finally diagnosed at age 7. He had neurofibromatosis type 1 (NF1). NF1 is a rare condition that can cause tumors to grow around nerves in the skin, brain, and other parts of the body.
For Carolyn, managing the health care system for her son’s treatment gave her a sense of urgency.
“Our son has had multiple health challenges with very few treatments. We’ve been eager for more information and progress,” she said. “We are seeing improvements—with more research, with more data. We would love to have more answers before our son grows up.”
Building a Framework for Precision Medicine
Josh was the first in his family to pursue a career in medicine. But he had considered other paths. As a middle school student, he started building computer systems and writing software. While in medical school, he wanted to mix his passion for computer programming with science and medicine. That’s when Josh discovered biomedical informatics, the perfect match for his interests.
“Informatics was really energizing,” Josh said. “It was a way to use my passions to actually make a difference in medical education and later in medical discovery.”
In 2007, he became a professor at Vanderbilt and continued to see patients. He taught classes in biomedical informatics and medicine. And he pioneered the use of electronic health records (EHRs) in research. At the time, health records could only be used for individual patients. It wasn't easy to pull information from EHRs in groups of patients. EHR data provided an opportunity to examine genetic connections in disease, he said.
“I felt it was imperative that we be able to learn something from every patient we saw. It’s all taken for granted that we can do this now,” Josh said. “Back then, it was really a powerful new paradigm.”
At Vanderbilt, he helped launch the first pharmacogenetics program in 2010. The program used DNA to work out what medications were the right fit for which patients. In 2015, he became the founding director of Vanderbilt's Center for Precision Medicine.
Becoming CEO of All of Us in 2020 was a natural fit. He had worked with founding NIH Director Francis Collins, M.D., Ph.D. The two had a strong bond as Dr. Collins discovered the genes for both cystic fibrosis and NF1, among others.
“Josh Denny is not only an internationally respected physician-scientist in the area of precision medicine. He is a dad who knows firsthand about the implications of genetic conditions for children and their families,” Dr. Collins said. “That just adds more fire to his passion for All of Us.”
Indeed, Josh is still pursuing his own research. He is tapping All of Us data to study both cystic fibrosis and NF1.
A Meeting of the Minds and Calling of the Heart
Carolyn and Josh Denny have encouraged one another throughout their careers. They met on a blind date 27 years ago while students at Vanderbilt. They soon discovered that they shared an independent streak, a passion for education, and a strong faith.
Carolyn was raised in a suburb of Philadelphia, PA, until her family moved to Nashville when she was in middle school. There she would stay for almost 30 years. She studied English and secondary education as an undergraduate at Vanderbilt. She later returned for her master’s degree in business. For several years, she worked for a book publishing company as a brand manager.
Carolyn and Josh married after her junior year and his first year of medical school. It was such a rare event on campus that the university newspaper featured it.
“It’s hard to believe that was almost 25 years ago,” Josh said. “Then again, we’ve come a long way since then! I guess you could say that for our family—four kids later—but you could also say that about medicine. A lot has changed for the better.”
All of Us is marking its own anniversary this May. It's been five years since All of Us started enrolling people nationwide. Today, the program’s database includes more than 440,000 participants. The group reflects the diversity of the country. The program has made nearly a quarter million DNA sequences available for researchers. That makes the database the world’s largest and most diverse resource of its kind. Now researchers can explore nearly any disease and work toward solutions. Those diseases include even rare ones, such as NF1.
“It was really important as we built All of Us that it be the kind of program that can cover all diseases, all lifestyles, all environments,” Josh said. “Because every person matters. And it is literally more powerful when we all participate.”
Read more about Josh and Carolyn in the full Voices of All of Us profile.
Coming Soon: Connect With Us About Mental Health and Well-Being
May is Mental Health Awareness Month, and we know that many people have questions about mental health and well-being. All of Us has asked you about such topics in the COPE surveys. We also touch on them in other surveys.
Soon, we will have a way for you to connect with us about mental health and well-being specifically. In the next few months, the program will launch two surveys that ask questions about mental health and well-being. The surveys will launch at the same time and be available in English and Spanish.
Participants who have completed The Basics, Overall Health, and Lifestyle surveys will be eligible. Also, participants who complete all 15 questions in the Personality section will receive a personality report based on their answers. Stay tuned!
All of Us Continues Sharing DNA Results
We are excited to announce that we have invited more than 70,000 participants to decide if they want to receive health-related DNA results. Each week, that number grows by 5,000.
We are inviting participants based on when they shared a sample with the program. We’ll send you an email or SMS when it’s your turn to decide whether to get your results.
For more information on becoming eligible to receive DNA results, view our Genomics page.
The All of Us Journey Exhibits
All of Us is on the road! The All of Us Journey buses help visitors from different communities learn about precision medicine research. Visitors can see the power of participation in health research firsthand. You can even sign up to be an All of Us participant if you choose to. You can find one in the following cities: