May 2019 Newsletter
All of Us Marks Its First Year and Looks to the Future
For Gus, the All of Us Research Program is not just a hope for medical breakthroughs in the future. It’s a way to make every day count now. When Gus learned that he had amyotrophic lateral sclerosis (ALS), doctors told him there was nothing he could do. But Gus disagreed. He knew he could use his voice to help others. Today, Gus is a participant ambassador for All of Us, sharing his ideas with the program and spreading the word about this chance to contribute to research. “When a person feels like they have purpose,” he says, “it makes a big difference.”
Gus is just one of the tens of thousands of people across the United States who are a part of All of Us. Since the program’s national launch 1 year ago, more than 190,000 people have joined. All of Us, which will last at least 10 years, seeks to enroll one million or more participants who will share information about their health over time.
“Each one of us has our own reason for joining,” says All of Us Research Program Director Eric Dishman, “and each of us has our own contribution to make to research.”
We know that our genes, lifestyle, and environment all affect our health. Participants can share information about many parts of their lives, from what they eat to their family medical history. All of Us will gather all this information in the largest research database of its kind.
“By looking at the things that make us unique,” Mr. Dishman says, “All of Us may unlock new ways to improve health for everyone.”
Francis S. Collins, M.D., Ph.D., is director of the National Institutes of Health (NIH), which supports All of Us. “Precision medicine has the power to transform health care,” Dr. Collins says. “And with its size, innovation, and commitment to diversity, this ambitious program will bring us substantially closer to delivering on the promise of precision medicine.”
Katie Baca-Motes, M.B.A., is director of the All of Us Participant Center at the Scripps Research Translational Institute. “We’re proud of the many program accomplishments to date,” she says, “and look forward to the new initiatives on the horizon—in particular, the integration of mobile apps and digital health devices to collect and analyze an unprecedented range and depth of health data.”
All of Us is looking ahead to an even more exciting future. Over the next year, the program will open up the data for research.
In Gus’s opinion, by truly listening to participants like him, the program is already winning. “If everyone shares in an idea, that’s a huge success. We’re all in this together.”Log into your account
All of Us By the Numbers
# of people registered
# of participants who have completed the consent process
# of participants fully enrolled*
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine samples.
Spotlight: Meet Carla, Medical College of Wisconsin
Carla didn’t start out in research. She was on track to become an accountant when her mother was diagnosed with breast cancer. At medical appointments, Carla watched providers struggle to communicate with her Spanish-speaking mother. She saw how language and insurance barriers kept her mother and other Hispanic patients from getting the care they needed. She decided she had to help.
Today, Carla is a proud member of the All of Us Research Program team at the Medical College of Wisconsin (MCW). She loves using her know-how and experience to spread awareness about the importance of research in Milwaukee’s predominantly Hispanic South Side.
“Addressing people’s concerns about research is something I feel really comfortable doing,” Carla says. “When they see someone that looks like them who can switch between English and Spanish, it brings a sense of trust and comfort.”
In her free time, Carla tutors young women who want to explore careers in science. “I’m really passionate about giving back to my community in any way that I can.”
Carla also likes baking and is currently working to perfect her recipe for macarons. “It reminds me of All of Us,” she says. “Trying lots of different ways to get the right recipe for success.”
What makes All of Us special, Carla says, is not only its size but its commitment to diversity. “We’re genuinely invested in this. And there are so many reasons for not only Hispanic participants to join, but anyone who wants to make a difference.”
She sees the All of Us team at MCW as a great example. “We’re the most diverse team on campus. Our differences make us stronger.”Watch the video
All of Us Research Update
The All of Us Data and Research Center is excited to bring you a first look at the program’s data. You can now use the Data Browser to explore some of the data All of Us has collected. The Data Browser, currently in beta testing, is open to all. It shows broad counts for things like survey answers, diseases, and medications. These counts combine information from many participants. For example, you can see the number of All of Us participants in your state. Your personal information will be kept private. No one will be able to use the information to identify you. You can also see snapshots of the latest enrollment statistics.
Here are just a few things we have learned about the All of Us participants:
- Approximately 33% of participants who have contributed electronic health record data to the program have primary high blood pressure. Primary high blood pressure is high blood pressure that isn’t caused by another condition.
- Approximately 63% of participants who have completed the Overall Health program survey feel extremely confident completing medical forms on their own.
- Pain is currently the top condition of participants who have contributed electronic health record data to the program.
- Radiographic imaging is currently the top procedure of participants who have contributed electronic health record data to the program.
Visit the Research Hub to learn more.
See snapshots of the latest enrollment statistics.
May Is National Physical Fitness and Sports Month
Did you know that regular exercise increases your chances of living a longer, healthier life? It also reduces your risk for high blood pressure, heart disease, and some types of cancer. Warmer weather makes this a great time to get outside and enjoy a walk or a bike ride with family or friends.
The Physical Activity Guidelines for Americans say adults should:
- Aim for 2 hours and 30 minutes of moderate aerobic activity each week. Examples include things like walking fast, dancing, swimming, and raking leaves.
- Do muscle-strengthening activities, such as lifting weights or using exercise bands, at least 2 days a week.
No matter your age, health, or body type, you can find something that makes you feel good.
The All of Us Speaker Series
Earlier this spring, All of Us launched a new virtual speaker series streaming online. The speakers have talked about what All of Us has to offer and explored developments in precision medicine. Upcoming topics will include:
- Information you can find in the participant portal and how you can use it
- The latest research on conditions such as diabetes, mental health, heart disease, and cancer
- Tips on using technology for your health and in your daily life
- Why participation in research is so important and the role we all play
Come and join the conversation. Sign up for alerts for the All of Us Research Program YouTube channel.
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