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:
- May 6, 2019: One year after launch, the program released the Data Browser. This website lets the public see summaries of data the program has collected. For example, you can see the top 10 medical conditions reported by participants.
- December 10, 2020: All of Us started sharing genetic ancestry and traits results with participants. Participants who donate a DNA sample can learn about where their ancestors might have come from hundreds of years ago. They can also learn how their DNA is related to traits like lactose intolerance or whether they like cilantro. So far, more than 182,000 participants have been invited to receive these results.
- May 27, 2020: The program launched the Researcher Workbench. Researchers first go through training on how to study program data and promise to use it responsibly. This cloud-based platform lets trusted researchers use the Workbench to study the data that participants have shared. Below we share some of the exciting discoveries researchers have already made.
- June 13, 2022: We reached 500,000 participants who started their journey with All of Us! This was an important step toward our goal of at least 1 million. We’re getting closer to this goal every day. We’re already at more than 635,000 participants.
- December 13, 2022: The program started providing health-related DNA results. Participants can choose to learn whether they may be at greater risk for certain diseases. They can also learn how their DNA affects how well certain medicines might work for them. So far, we have invited more than 70,000 participants to decide if they want these results.
- April 3, 2023: We reached more than 5,000 registered researchers. Many of these researchers also come from groups that have been left out of the research workforce in the past.
- April 20, 2023: Registered researchers get access to new data from All of Us. They can study new survey responses, new Fitbit data, and new genomic data. When we added this new data, All of Us became the largest, most diverse genomic dataset of its kind in the world.
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.
