If I join the All of Us Research Program, what will you ask me to do?
Thanks for your interest! If you decide to join All of Us, we will ask you to share different kinds of information. We will ask you basic information like your name and where you live. We will ask you questions about your health, family, home, and work. If you have an electronic health record, we will ask for access. We may ask you to go to a local clinic or drug store for a free appointment with us. At this appointment, we will collect basic physical measurements, including your height, weight, and hip and waist measurements, as well as your blood pressure and heart rate. We might ask you to give blood and urine samples at the appointment. https://www.joinallofus.org/en/what-you-would-need-to-do
Will participants have access to their genomic sequence?
Thank you for your question. We will provide genomic results to participants who wish to see them. You can opt out of receiving these results. We will return information from your samples as tests are completed. This may take some time. Our program is working to providing genetic counselors to help people interpret their results. You can learn more here: https://allofus.nih.gov/news-events-and-media/announcements/all-us-research-program-issues-funding-opportunity-genetic-counseling-resource
How will access to the database be regulated for researchers? Will they have to go through special training?
Access to the All of Us database is regulated and researchers must get permission to use it. Researchers must register with the program. This registration process includes ethics training. Approved researchers must also agree to follow strict rules regarding data usage, privacy, and security. They will not be able to see participants’ names or other identifying information.
What are your main recruitment strategies (social media/partnering with other organizations) and which ones are working best?
We have national social media accounts (@AllofUsResearch) on Facebook, Twitter, and Instagram. We work with a network of partners and health care providers to bring All of Us to all of you. We also have a touring All of Us Journey exhibit visiting cities across the U.S. You can learn more at JoinAllofUs.org. Together these outreach strategies help the research program move toward its goal of enrolling one million people.
What does All of Us hope to accomplish for and with underrepresented participants?
Our aim is to speed up health research breakthroughs for everyone. We want to engage a community of participants that reflects the diversity of America, including many people who haven’t taken part in medical research before. We welcome participants both healthy and sick, of all backgrounds, and from all regions of the country. By doing so, we may help researchers develop better treatment and care for all of us.
I’m already in a study about a condition I have, so why should I join All of Us?
Instead of focusing on just one disease or condition, All of Us will help a lot of researchers study many different things about health. It will include participants from many different backgrounds.
How is this program funded?
The All of Us Research Program is publicly funded, with resources appropriated each year by the U.S. Congress. The National Institutes of Health, the federal agency for health science research, runs All of Us.
I saw that you want access to my electronic health record (EHR). Why do you need that?
By studying EHR information from many people, researchers can find patterns. Those patterns can help them understand what keeps people healthy and what happens when people get sick.
I've enrolled. Will I be contacted for more information soon?
We are thankful for your involvement at any level. We are just getting started, and new partner sites are opening all the time. We also have our touring All of Us Journey exhibit, which visits cities across the U.S. Please stay tuned and visit JoinAllofUs.org for the latest information about the research program. You can also sign up for the All of Us newsletter here: https://www.joinallofus.org/en/news-subscribe
Who will own my data? Will pharmaceutical companies make money from it?
The All of Us dataset is owned by the All of Us Data and Research Center at Vanderbilt University Medical Center, although participants will have access to their own information. Data that participants share will be accessible to approved researchers to help them make discoveries. These researchers may be from anywhere in the world. They may work for commercial companies, including drug companies. Their research may lead to new tests, drugs, or other commercial products. These inventions will be the property of the researchers.
Will dental data be integrated or added to Electronic Health Record data to track causal or correlation of dental in disease development?
Your electronic health record (EHR) has information about your health and the care you have received. This may include oral health. However, we are not currently integrating dentists’ records into our data resource. In the future, dental records will be considered as we expand our EHR collection. For now, primary care records are our first priority.
How is Million Veterans connected to All of Us?
The All of Us Research Program is partnered with the Veterans Health Administration (VA). By working with All of Us, the VA is building upon its existing work with the Million Veterans Program (MVP) to make sure that the Veteran population is represented in this very important research program.
The All of Us Research Program is a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health.Visit All of Us