For the last several years, the National Institutes of Health’s (NIH) All of Us Research Program has endeavored to collect the health data of over 1 million Americans to ensure healthcare works for all of us.
Are they close to 1 million participants?
How has it helped boost research?
Let’s look at five notable milestones the program has reached in its mission to build a health data network that looks like all of us.
1. Increasing the Diversity of Research Participation
With help from local community partnerships, including UT Health San Antonio, across the country, over 790,000 people nationwide have decided to join the program’s expansive and inclusive research network, the program announced in a recent news release.
In addition, over 540,000 participants have completed the initial steps, which include sharing data and samples.
A staggering 87% of the 540,000 participants are part of communities that often go underrepresented in research, including Latinos.
2. Investing in Participant Health
The All of Us Research Program gives back to its participants.
Those who choose to share their health data and samples with the program receive several personalized health reports based on their DNA.
First, you can get a free ancestry report.
With this report, you can discover where your family may have lived hundreds of years ago.
Two other reports share additional information based on your DNA. One gives information on your genes and what they mean for your health. The other gives insight into your hereditary risk for diseases like cancer.
So far, over 100,000 participants have received both reports, which can help the participants navigate decisions about their health and disease prevention.
This milestone amounts to over 2,000 participants learning about their genetic variants in regard to serious health conditions and 87,000 now know how certain medicines impact their bodies.
“Knowing these research results, participants can be engaged partners with their health care providers to personalize their screening, interventions, and medications,” the news release stated.
3. Growing of Researcher Force
The All of Us Research Program has an extensive network of researchers using the data collected by the program to learn about how factors such as socioeconomic status, genetics, and mental health impact diseases and other adverse health conditions.
So far, the program has enabled over 10,000 researchers from over 750 organizations.
On trend with the All of Us Research Program’s initiative to diversify its research pool, more than 85% of its researchers are from groups that are historically underrepresented in the biomedical field.
Hosting the data on the program’s Researcher Workbench platform, researchers have been able to access data from the point of registration at a median time of 29 hours — a far shorter than most other research data programs, the news release touted.
4. Contributing to Health Research Discoveries
As more researchers join All of Us, more is uncovered using the data provided by participants.
Researchers have launched over 10,000 projects using All of Us data.
This work has culminated in the publication of hundreds of papers in peer-reviewed journals.
The topics range from conditions such as diabetes, depression, and glaucoma all the way to life-threatening diseases like cancer and heart disease.
The data provided by participants has also led to valuable COVID-19, alcohol and substance use, and physical activity research.
One of the most notable discoveries using the diversity of the All of Us data was the uncovering of 275 million new genetic variants, which may offer insights into genetic influences on health and disease.
“With their generous contributions, we are building a rich dataset spanning genomics, health history, lifestyle factors, and social determinants of health,” according to the news release.
“The size and diversity of this dataset means that All of Us has growing power to investigate hundreds of diseases in diverse populations, paving the way for new insights that will benefit all.”
5. Building the Future of Research
As the reach and participation of the All of Us Research Program continues to grow, the program is looking to expand to include pediatric enrollment to support its mission to engage research across all age groups.
The program hopes that its data collection might reveal more information about how environmental factors, clinical care, and more can be linked to disease.
They also aim to grow existing opportunities while seeking out new ones, which includes additional studies, like the Nutrition for Precision Health study supported by the NIH Common Fund.
Benefits of Joining All of Us
The All of Us Research Program understands that there are barriers to including ethnic and racial minorities in research, so they’ve taken a more inclusive approach to registering participants.
The first step of registration is signing the consent forms, which includes sharing your electronic health records — this part is optional.
Next up is filling out a few surveys that ask you about your family and personal history.
Lastly, you’ll provide your measurements and a DNA sample by making an appointment with a local blood bank.
While that part is also optional, your participation will unlock a wealth of information you would have had to pay to access.
You’ll receive the option to get DNA results, which might clue you in to risk factors for certain diseases, an ancestry report so you can see where you come from, and access to a genetic counselor!
It’s free to join and your contribution might just impact research in a big way.
Find out what power your health story can have on research by visiting the All of Us Research Program website.
The post 5 Big Accomplishments for the All of Us Research Program appeared first on Salud America.
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