All eligible adults who live in the United States can join the All of Us Research Program. You do not need to be a U.S. citizen or permanent resident. Right now, only people who are 19 or older can join All of Us at UAB Medicine. Children will be able to join in the future.
If you decide to join the All of Us Research Program at UAB Medicine, the first step is to create an account. You can do this by visiting allofus.uabmedicine.org, downloading the All of Us app,or by going to one of our partner centers. You'll need to provide your name and email address or mobile phone number to enroll.
Once you've created your account, you will be asked to give your consent. This includes reviewing a series of videos, which will provide more detailed information about the program. These describe all the types of information you may be asked to give. Once you feel comfortable that you know what to expect, and if you are ready to give your consent, you'll electronically sign the consent form. You can do all of this from your computer, tablet, or smartphone, or at a partner center.
Agree to Share Your Electronic Health Record (EHR)
As part of the consent process, we will also ask you to agree to share your electronic health record (EHR). Sharing your EHR is your choice. If you decide not to share your EHR, you can still participate by answering health surveys. But you will not be asked to take part in some other aspects of the program.
Your DNA results could include information about your ancestry (which is where your family comes from), your genetic traits, whether you have an increased risk for getting certain health conditions, and how your body might react to certain medications. You may want to know this information or you may not.
You will be asked to answer several health surveys. These are available on the Participant Portal. You can answer the surveys at your convenience using your computer, tablet, or smartphone. Your name will never be on these. Your answers will help build the All of Us Research Program database. Approved researchers can access this database to conduct their studies.
You may be invited to visit one of our partner centers to have your physical measurements taken (height, weight, blood pressure, etc.) and provide blood and urine samples. You will be able to choose the partner location most convenient for you.
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.
Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, your genes, and your family health history. The goal of precision medicine is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.
If we ask you in the future to go to an All of Us partner center to be physically measured and give blood or urine samples and you decide to do it, we will offer you a one-time compensation of $25. It may be in the form of cash, a gift card, or an electronic voucher.
Your information could help researchers to make discoveries. If any of their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers who develop them or the places where they work.
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