All of Us North Carolina

If you join, you will be contributing to research that may improve health for everyone and for future generations. Our goal is to understand how different factors together affect health and speed up research to develop new and tailored treatments. Here are some examples of what researchers might be able to discover from their research:

• Better tests to see if people are sick or are at risk of getting sick.
• Better mobile apps to encourage healthy habits.
• Better information about which or how much of a medicine is right for each person.

Also, you will be able to see your All of Us information, which might be interesting to you. It may help you learn about your health. Adult participants may also learn about their DNA, if they choose to. Participants can share any information they receive from All of Us with their doctor, if they choose.

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 may 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 would measure your weight, height, hips, and waist, as well as your blood pressure and heart rate. We might ask you to give samples, like blood or urine, at the appointment. We also want to know if you will want information about your DNA.

Your privacy is very important, and we will take great care to protect it if you join. Here are a few of the steps we will take:

• Information we collect will be stored on protected computers. We will limit and keep track of who sees the information.
• We will remove your name and other direct identifiers (like your Social Security number) from your information and replace them with a code. There is a master list linking codes to names. This list is kept secure, and very few people have access to it.
• To work with your health information, researchers must promise not to try to find out who you are.
• We will tell you if there is a data breach.
• The All of Us Research Program has Certificates of Confidentiality from the U.S. government. This will help us fight legal demands (such as a court order) to give out information that could identify you.

Still, loss of privacy is a risk of taking part in the All of Us Research Program. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.