Do I have to give my Social Security number?
No. We may ask for your Social Security number to help match your information to other information, but you do not have to give it to us.
How often will I hear from the ``All of Us`` Research Program?
We will offer regular updates about the All of Us Research Program. You can choose if you would like to get these updates. If you choose to get the updates, you can tell us how often and in what way you would like for us to contact you.
We may contact you to answer surveys from time to time. You can choose to answer the surveys or not. We may contact you to schedule an appointment to provide samples and have measurements.
Will you be studying my disease or condition?
Researchers will use the data collected by the All of Us Research Program to study many different diseases and conditions. It is up to each researcher to decide what they study. You can learn more about the research being done at our website, JoinAllofUs.org.
How can I enroll in a clinical trial for my specific disease or condition?
A clinical trial is a type of research study. Clinical trials look at specific medical treatments to see if they are safe and effective for humans. All of Us is a research program. It is not a clinical trial.
If you join the All of Us Research Program, we will ask you if you want to hear about chances to take part in other research. If you say yes, we will let you know about other research studies. You can then decide if you want to join those studies. You can say yes or no and still be part of the All of Us Research Program.
You can search for clinical trials at ClinicalTrials.gov.
If you find a problem with my blood or urine, will you let me know?
The All of Us Research Program is a research effort, so we cannot provide any health care.
Right now, we don’t know what tests we may do on your blood and urine samples. We also don’t know when we will do the testing. It may be months, or even several years, until we do certain tests on the samples you provided. These tests may not tell you very much about your health currently, but they will be very helpful for research.
We will share the numbers we get back from the tests. We may also provide some educational materials to help you learn more about the tests.
We always recommend that you talk to your health care provider about your health care needs and concerns.
Will I get paid?
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.
If I join the ``All of Us`` Research Program, will it change my health care?
No. All of Us is a research program. It is not medical care. You can keep your current health care team even if you decide to join the All of Us Research Program.
Will researchers contact me directly?
No. The All of Us staff will be the only ones contacting you about the All of Us Research Program.
You will be able to choose how frequently we contact you. From time to time, we may send you new questionnaires or offer other ways for you to share information about your health.
What are the risks of taking part in the ``All of Us`` Research Program?
The main risk of taking part in the All of Us Research Program is to your privacy. If there is a data breach, someone could get access to the information we have about you. 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.
We will gather information from you through the All of Us Research Program app or website. You may be asked to wear a health tracker. There is a risk to your privacy whenever you use an app, website, or health tracker. In general, there is no additional risk to your privacy if you use any of these technologies as part of the All of Us Research Program. However, the All of Us Research Program will be collecting many different types of information from you. There may be additional risk to your privacy in case of a data breach, because of the amount of information that the database contains.
Although we will not give researchers your name, we will give them basic facts such as your race, ethnic group, and sex. This information helps researchers learn whether things that affect health are the same in different groups of people. These findings could one day help people of the same race, ethnic group, or sex as you. However, others could misuse the information to support harmful ideas about groups.
If you give a blood sample, the most common risks are brief pain and bruising. Some people may become dizzy or feel faint. There is also a small risk of infection.
Taking part in the All of Us Research Program may have risks that we don’t know about yet. We will tell you if we learn anything that might change your decision to take part.
When will I get my DNA results?
Once you provide your blood or saliva samples, it might take a few months or even a few years for All of Us to check your DNA. We plan to start by processing a portion of participant DNA samples. We will then process more and more DNA samples over time. When we are ready, we will ask you to tell us if you want your DNA results.
You will get your DNA results over time on an individualized timeline. The timing will depend on when All of Us can analyze your DNA. This will also depend on when you submit your blood or saliva samples to All of Us. Since we plan to check your DNA in a variety of ways, you could possibly get some DNA results fairly quickly but then wait years to get other DNA results. If we discover new ways to analyze DNA, we might look at your DNA again in the future and have updated results for you.
Please check your All of Us account regularly for updates.