All of Us
All of Us: Partnering Together for the Future of Precision Medicine
Posted on by Dr. Francis Collins
Over the past year, it’s been so inspiring to watch tens of thousands of people across the country selflessly step forward for vaccine trials and other research studies to combat COVID-19. And they are not alone. Many generous folks are volunteering to take part in other types of NIH-funded research that will improve health all across the spectrum, including the more than 360,000 who’ve already enrolled in the pioneering All of Us Research Program.
Now in its second year, All of Us is building a research community of 1 million participant partners to help us learn more about how genetics, environment, and lifestyle interact to influence disease and affect health. So far, more than 80 percent of participants who have completed all the initial enrollment steps are Black, Latino, rural, or from other communities historically underrepresented in biomedical research.
This community will build a diverse foundation for precision medicine, in which care is tailored to the individual, not the average patient as is now often the case. What’s also paradigm shifting about All of Us is its core value of sharing information back with participants about themselves. It is all done responsibly through each participant’s personal All of Us online account and with an emphasis on protecting privacy.
All of Us participants share their health information in many ways, such as taking part in surveys, offering access to their electronic health records, and providing biosamples (blood, urine, and/or saliva). In fact, researchers recently began genotyping and sequencing the DNA in some of those biosamples, and then returning results from analyses to participants who’ve indicated they’d like to receive such information. This first phase of genotyping DNA analysis will provide insights into their genetic ancestry and four traits, including bitter taste perception and tolerance for lactose.
Results of a second sequencing phase of DNA analysis will likely be ready in the coming year. These personalized reports will give interested participants information about how their bodies are likely to react to certain medications and about whether they face an increased risk of developing certain health conditions, such as some types of cancer or heart disease. To help participants better understand the results, they can make a phone appointment with a genetic counselor who is affiliated with the program.
This week, I had the pleasure of delivering the keynote address at the All of Us Virtual Face-to-Face. This lively meeting was attended by a consortium of more than 2,000 All of Us senior staff, program leads with participating healthcare provider organizations and federally qualified health centers, All of Us-supported researchers, community partners, and the all-important participant ambassadors.
If you are interested in becoming part of the All of Us community, I welcome you—there’s plenty of time to get involved! To learn more, just go to Join All of Us.
Links:
All of Us Research Program (NIH)
Join All of Us (NIH)
NIH’s All of Us Program Joins Fight Against COVID-19
Posted on by Dr. Francis Collins
We’ve learned so much about coronavirus disease 2019 (COVID-19), but there’s still much more that we need to learn in order to defeat this devastating pandemic. Among the critical questions: why do some young people who appear healthy and have no history of chronic disease get very sick from the virus? And why do some people in their 80s or 90s seemingly just shrug off the infection? There’s something going on biologically, but we don’t yet have the answers.
We do, however, have some resources that will enable us to examine lots of data in search of biological clues. One of them is NIH’s All of Us Research Program, which is seeking the help of 1 million people to build one of the most diverse health databases in our nation’s history. Two years after its national launch, the program already has enrolled nearly 350,000 diverse participants from across the United States.
As its name suggests, All of Us is open to all people over age 18 in communities all around the country. An important strength of the effort has been welcoming participants from all backgrounds. Indeed, about 75 percent of people who have volunteered for the program come from groups that have traditionally been underrepresented in medical research. That includes people from many racial and ethnic minority groups, as well as those of many different ages, socioeconomic backgrounds, and geographic locations, including remote and rural areas.
Because of COVID-19 and the need for physical distancing to curb the spread of the potentially deadly virus, All of Us has been forced to halt temporarily all in-person appointments. But program leaders, including Josh Denny, chief executive officer of All of Us, and Kelly Gebo, the program’s chief medical and scientific officer, saw an opportunity to roll up their sleeves and help during this unprecedented public health challenge. In fact, Gebo reports that they’d already been hearing from many of their participant partners that they wanted to be a part of the solution to the COVID-19 pandemic.
To rise to this challenge, the All of Us Research Program has just announced three initiatives to assist the scientific community in seeking new insights into COVID-19. The program will:
• Test blood samples from 10,000 or more participants for the presence of SARS-CoV-2 antibodies, indicating prior infection. The testing will start on samples collected in March 2020 and work backward until positive tests are no longer found. This will show the prevalence of novel coronavirus exposure among All of Us participants from across the country, allowing researchers to sift through the data and assess the varying rates and timing of infections across regions and communities.
• Rapidly collect relevant information from more than 200,000 participants who have shared their electronic health records. A number of those participants have already either been diagnosed with COVID-19 or sought health care for related symptoms. The program is working to standardize this information. It will help researchers look for patterns and learn more about COVID-19 symptoms and associated health problems, as well as the effects of different medicines and treatments.
• Deploy a new online survey to understand better the effects of the COVID-19 pandemic on participants’ physical and mental health. This 20- to 30-minute survey is designed both for participants who have been ill with COVID-19 and those who have not knowingly been infected. Questions will be included on COVID-19 symptoms, stress, social distancing and the economic impacts of the pandemic. Participants are invited to take the survey each month until the pandemic ends, so researchers can study the effects of COVID-19 over time and begin to better understand how and why COVID-19 affects people differently.
As this data becomes available, researchers will look for new leads to inform our efforts to bring greater precision to the diagnosis, treatment, and prevention of COVID-19, including for those communities that have been hit the hardest. Another hope is that what is learned about COVID-19 through All of Us and other NIH-supported research will provide us with the knowledge and tools we need to avert future pandemics,
In case you’re wondering, I happen to be among the thousands of people who’ve already volunteered to take part in All of Us. If you’d like to get involved too, new participants are always welcome to join.
Links:
Coronavirus (COVID-19) (NIH)
All of Us Research Program (NIH)
Join All of Us (NIH)
New Chief Executive Officer for All of Us
Posted on by Dr. Francis Collins
NIH Seeks Inaugural Chief Data Strategist
Posted on by Dr. Francis Collins
All of Us Research Program Speaker Series
Posted on by Dr. Francis Collins
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