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The All of Us Research Program is almost 5 years old. Five years might feel like a long time. But we’re just getting started.
We hope participants will stay with us for the long run. Let’s talk about why and how donating data over a long period of time can lead to important research discoveries.
The Power of Long-Term Research
Researchers can use people’s data to understand how diseases develop. But a disease can be very different depending on how long someone has been sick. Researchers benefit from having data over a long period of time.
Long-term research lets researchers understand disease at different stages of life. Involving many people lets researchers see what may cause someone to get sick. This information may help researchers predict who may be affected by a disease. They may find out if a disease is tied to genetics, or if people from certain backgrounds or certain locations may be at higher risk of getting a disease.
One long-term study is the Framingham Heart Study. It began with 5,209 healthy people in 1948. Participants shared their health records and information about exercise routines and eating habits. Researchers kept track of how this data changed and who developed heart disease over time. From this data, researchers have learned about risk factors for heart disease and ways to reduce those risks.
This study is still going on today. There are now more than 14,000 people from three generations in the Framingham Heart Study. Many in the newer generations are descendants of the first group of participants. This family data has let researchers study how genetics affect someone’s risk for heart disease.
More Data + More Time + More Diversity = More Research
Like the researchers in the Framingham Heart Study, All of Us knows that sharing health information over a long period of time helps. Many types of data the program asks for can easily be shared for years or decades.
For example, you can share electronic health records (EHRs). EHRs are records your health care provider uses to keep track of your health. Your EHRs might cover the time you’ve been with All of Us, and even further. Some All of Us participants have shared EHR records from as far back as 1980. These records have given researchers access to more than 30 million procedures.
If you have a Fitbit, you can also share Fitbit data of your physical activity. Right now, researchers have 31 billion data points they can study. This data can go back as far as 14 years. It includes information on sleep patterns, heart rate, and exercise.
This data lets researchers look at stages of disease and health over time. They also can see how your data may be related to times of illness or health in your life. For example, researchers linked data from personal Fitbit devices and EHRs to find the link between step count and chronic illness. Researchers can learn even more when this information comes from many different people.
The Importance of 10-Plus Years
Researchers using All of Us data have made so many discoveries with the data they have. Imagine what they could learn with 10 years of data.
Having this data is a responsibility that All of Us takes very seriously. The program protects your privacy by making sure researchers can’t have information like your name and where you live. All of Us also makes sure that researchers follow a set of rules when they want to access data like information about your DNA.
Whether you are a participant for one month or 10 years, we value your commitment to All of Us. The data you share will help researchers make new discoveries that could improve people’s health. We’ve accomplished so much in under 5 years. And because of the power of long-term research, we’ll accomplish even more in the future.
More than 606,000 participants who have completed the consent process.
More than 418,000 participants fully enrolled.*
More than 4,000 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.
Our health doesn't just reveal itself when we turn 18, the age you currently have to be to join the All of Us Research Program. Our childhood and teenage years shape our adulthood. Our adult well-being comes from learned habits, opportunities, and, of course, our genes.
What can we learn about health and health care from our earlier years? All of Us is working to find out. We plan to include infants, children, and adolescents in the next year or two. This will expand what is already one of the largest, most diverse groups of research participants ever. It’s another step toward truly including all of us.
All of Us has named Sara Van Driest, M.D., Ph.D., as its Director of Pediatrics to lead the effort to bring children from birth to age 18 into the program.
Dr. Van Driest is a physician-scientist from the Vanderbilt University Medical Center. As a pediatrician, she treats children and adolescents. She has studied how medications such as antibiotics and painkillers work in children. But like much other research, studies with children often fail to include kids from diverse communities, such as non-White races and ethnicities.
"It's been clear to me that pediatrics research often doesn't reflect the patient populations that I see in my own clinic," Dr. Van Driest said. "What drew me to All of Us is the possibility of partnering with families to build a large cohort of pediatric participants who reflect the diversity of our country."
Broadening the Landscape
All of Us is seeking to speed up research in precision medicine. Precision medicine takes into account individual differences in patients' genes, environments, and lifestyles. This kind of health research is new for adults and for children.
Dr. Van Driest wants to make sure All of Us includes different kinds of families and life experiences. She will help develop a rich data set that better represents a diversity of participants. "Then, in the future, we can do a better job taking care of children with evidence-based approaches for precision health," she said.
The program will increase the amount of research with children and teens. Historically, children were once seen as too vulnerable to participate in research. But Dr. Van Driest says that approach leads to a lack of knowledge. Research is needed to find the best ways to support child health.
“There is so much to learn from children and adolescents. All of Us can help researchers do that. The experience of being a child is so different now than it was 10 or 20 years ago," said Dr. Van Driest. "With the data we collect, researchers won’t just identify risk factors for poor health, but they can also identify resilience factors for good health."
The Importance of Consent
Doing research with children and adolescents is different from working with adults. Young children might not be able to read or speak for themselves, so their parents or guardians need to give permission for them to participate in research.
Minors can't legally provide consent, but they can say yes or no. This is a process called assent. "If a 12-year-old says, 'I don't want to do this, this is not something I want to participate in,' we will respect that," Dr. Van Driest said. But kids mature at different rates. Sometimes it takes repeat visits to make sure the child and the family are ready to move forward.
"Experienced research staff are the key to success in pediatric research," Dr. Van Driest said. "And we have really experienced teams to help us do this kind of work."
Also, as any parent will tell you, children might not be as patient as adults. They might need breaks during an enrollment visit. And they may need toys and distractions. Staff will make a special effort to be sure our research activities are as pleasant as they can be for young people and their families.
Adults Were Children Too
Pediatrics research with All of Us doesn't have to start with children. Some adult participants have medical records that reach back as far as 1980. Some researchers are already making use of that electronic data. Dr. Van Driest hopes researchers continue to link that early data to later conditions in adults. "That is something that folks can start looking at now," Dr. Van Driest said.
Enrolling children requires some big changes to how we work. For example, your All of Us account was designed for an adult. It belongs to you. It only includes your information. And you maintain your account over a lifetime. That system won’t work for children. Parents may need to share accounts with their children. The program hopes that if a parent enrolls their baby, the baby will participate long enough to reach adulthood. What does that mean for that new adult’s account? It starts out being handled by a parent, but somewhere in the teen years—before or after 18—the teen might take it over.
There are many practical and technical issues that we need to figure out. The effort will take some time, Dr. Van Driest said. We can’t begin to enroll children until we have a plan in place to answer all of these important questions.
"Right now, there is a push to build what we need to in the program to enable pediatric participation. And there's a lot of building that needs to be done!" she said. "We need to look at the entire participant journey from the lens of a young person. We want to make sure that it's a great experience for the children and their families."
Read more about Dr. Van Driest and her vision for All of Us.
March is National Nutrition Month®. This is a time to talk about and encourage healthy eating habits. Eating a healthy diet is important for our health. Eating well can help us lead more active lives. A good diet can also prevent certain diseases.
Your participation in All of Us is helping researchers learn more about nutrition. And we’re about to launch new research that can help lead to new discoveries about nutrition and health.
What is Nutrition?
Nutrition is the study of food and how it helps our bodies stay healthy. Food has different nutrients we need to support our body’s functions. We all need a proper balance of these nutrients. Some people may need certain foods to get that balance.
Understanding nutrition goes beyond food. It includes healthy eating habits. Factors like income and where you live also can make it easier or harder to eat healthy foods.
Nutrition can differ from person to person because of their lifestyle, genetics, metabolism, and where they live. Like medicine, nutrition is not “one size fits all.” This is where health research comes in.
Nutrition Studies with All of Us
Researchers are using All of Us data to study nutrition in different ways.
Some researchers are using data from EHRs and surveys to study how nutrition is related to cancer risk. They want to know if eating or not eating certain foods may be more important than genetics in predicting disease risk.
Others are studying how changing the foods you eat can help manage certain diseases. If eating healthy foods helps lower your risk for disease, it may also help manage conditions like heart disease or diabetes.
Researchers also want to find out who struggles with nutrition and why. Some want to find easier ways to test for poor nutrition in a person’s blood or urine. Other researchers want to see if certain groups of people have a greater risk for poor nutrition. Science has only just begun to understand the relationship between nutrition and genetics.
Nutrition for Precision Health
All of Us is also working with the National Institutes of Health (NIH) on a study called Nutrition for Precision Health (NPH). For this study, 10,000 people will track the foods they eat for up to 10 days, give blood and stool samples for lab tests, and share information through wearable technology. The study aims to discover how people’s bodies respond differently to food. Researchers may be able to use that information in the future to better tailor diets to individuals and improve overall health.
This is one of All of Us’ first partner studies. It will be open only to eligible All of Us participants. And the information participants give to NPH will go into the All of Us database for researchers to use in other studies about nutrition and health.
Because our participants are so diverse, researchers will be able to study a lot of data about people’s different backgrounds, genes, and environments. That information can improve our knowledge of nutrition so that people can know more about what they should eat for better health.
Soon All of Us will begin reaching out to participants who live near NPH sites to ask if they want to learn more. These sites are in Alabama, California, Illinois, Louisiana, Massachusetts, and North Carolina. Just like All of Us itself, you don’t need to participate in NPH if you don’t want to. But you do need to be an All of Us participant to join NPH. Staff will be able to help you decide if this study is right for you.
Whether or not you decide to join NPH, we appreciate the data you share. Your participation is important for all kinds of health research.
We’ll have more information to share about NPH in time. Stay tuned! In the meantime, to learn more about NPH, visit https://commonfund.nih.gov/nutritionforprecisionhealth.
“Even though our DNA is different from others’, we are all connected.” —Kristal Nemeroff, R.N., B.S.N.
The name of Kristal Nemeroff’s hometown in the Pocono Mountains is a poetic portrayal of her life: Effort, PA.
Just getting up every day takes effort for Kristal. She has a genetic condition commonly known as brittle bone disease, or formally known as osteogenesis imperfecta (OI). Her resolve to overcome obstacles has allowed her to push the limits the condition tries to place on her. She credits her family’s support and her taking part in research that inspired her to break barriers.
Kristal inherited her condition from her mother, Carla Nemeroff, who also has OI. When Carla was pregnant with Kristal, her daughter's femur broke in utero. It healed by the time she was born. But Carla knew her daughter would have fragile bones, so she named her "Kristal." Both mother and daughter have joined All of Us. They believe in the power of science and human connection.
Now she is one of 60 All of Us participants with brittle bone disease whose data can be explored by researchers. Brittle bone disease is a rare genetic disorder that affects the protein collagen. Collagen is found in bone, teeth, skin, tendons, and parts of the eye. People with the condition have bones that can break easily, sometimes with no obvious cause. Kristal said she wants to help advance knowledge and treatment of her condition.
At 13, Kristal was one of 18 children who took part in a National Institutes of Health study of the drug pamidronate. The drug increases bone density and slows the breakdown of bones. This was the first study of children with OI in the United States exploring this kind of drug. The study showed that bone density and spines in children improved after one year of treatment.
A few weeks after her first infusion, she said, she started to feel less pain in her spine and could move more. “I’ll never forget waking up and noticing that my back didn’t hurt as much, and I could stand up more comfortably,” Kristal said. “It gave me hope.”
Kristal said her participation in research studies at the NIH strengthened her bones. Her experience also influenced her decision to pursue a career in nursing. But when she applied to nursing school in Pennsylvania, school administrators questioned whether she could succeed as a nurse because her disability limited her movement. One of her doctors at the NIH, Scott M. Paul, M.D., wrote to the school in support of her application, saying she would be an excellent nurse.
“It was the most important letter of my life,” Kristal said. She became a registered nurse and got her bachelor’s degree in nursing science in 2011. That year, she was hired as an elementary school nurse not far from her hometown.
Kristal said her life’s goal is to teach children that even if they have a chronic illness or disability, they have the same rights as anyone. They have the right to health care, education, and the opportunity to pursue their dreams.
“As a nurse with a disability, I feel fulfilled by challenging general perceptions about disabilities,” Kristal said. “Having the patient perspective from my experiences has made me a great nurse.”
Read more about Kristal in the full Voices of All of Us profile.
Karl Surkan Advocated for Sexual and Gender Minorities in Health Research
Karl (KJ) Surkan, Ph.D., was a professor in the Women’s and Gender Studies Program at the Massachusetts Institute of Technology for more than 18 years. He passed away at home on Saturday, January 28.
Dr. Surkan's passion was to involve people who have been left out of research in the past. And to promote LGBTQIA+ patient rights. Much of his research focused on including sexual and gender minorities (SGM) in health research. He studied what happened when they were left out. He also studied new media and health activism and online social movements. He explored feminist media and how queer/trans people appeared in media and politics. His research connected bioethics, science, and technology.
Dr. Surkan was one of the first participant members on NIH’s All of Us Research Program Steering Committee. He fostered efforts for the program to be better. One of his most noted questions was, “Who is not at the table, and why?”
Disability Advocate Stephen Mikita Promoted and Pushed the Bounds of Medical Research
All of Us mourns the loss of advocate Stephen Mikita, J.D. He passed away March 1 at his home in Utah surrounded by his family. At age 67, Mikita was one of the oldest people with spinal muscular atrophy. The rare disorder affects motor neurons. Faulty nerve cells cause muscles to weaken and shrink over time. He retired in 2021 after 39 years as assistant attorney general in Utah.
Mikita pushed the bounds of medical research through his own personal journey. He was the first freshman to attend Duke University using a wheelchair. He served as a law clerk for the late U.S. Senator Orrin Hatch of Utah in the 1980s. His work with Sen. Hatch helped the senator see the value in passing the historic Americans with Disabilities Act of 1990.
Mikita was one of the first participant members of NIH’s All of Us Research Program Steering Committee. He led a participant advisory board. He helped recruit people to join All of Us.
“This type of research program has never been done before in the history of our country,” Mikita said in a 2022 Voices of All of Us profile. “It’s revolutionary in nature both in its scope and scale. All of Us is about becoming part of something that is so much larger than you and me.”
Mikita wrote two memoirs. “The Third Opinion” was published in 2000. “I Sit All Amazed: The Extraordinary Power of a Mother’s Love” was published in 2011.
All of Us Continues Sharing DNA Results
All of Us started returning personalized health-related DNA results to participants at the end of 2022. These participants have chosen if they want to get information about their hereditary disease risk or how their bodies respond to certain medicines.
We offer results to participants based on when they shared a sample with the program. Participants who gave their sample first receive their invitation first. Right now, we’re sending out about 5,000 invitations each week.
Keep an eye on your email or text messages for your invitation. And check back in during our May issue for an update on our progress. 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: