Frequently Asked Questions (FAQs)
Top 10
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.
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.
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.
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 results 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.
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 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.
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.
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.
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.
One of the benefits of participating in the All of Us Research Program is getting your DNA information for free, if you want it. We plan to check your DNA for information about:
- Your genetic ancestry (where your family might have lived hundreds of years ago),
- Your genetic traits (why you might love or hate cilantro),
- Whether you may have an increased risk of developing a serious health condition, such as certain cancers or heart disease,
- How your body might react to certain medicines.
Over time, we may offer more types of DNA results. You can always choose which DNA results you want. We would then share the results—which are not a medical diagnosis—with you through your All of Us account. You will not be able to see your DNA results immediately after joining. You will get your DNA results over time on an individualized timeline.
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 remember that All of Us is a research program. If you know you are at risk for certain health conditions, speak with your health care provider.
General Information
Research is the process of finding out new things.
Health research is the process of finding out new things about improving people’s health.
Health research is important because we all want to live long and healthy lives. People who do health research are trying to identify better ways to keep us all healthy.
The Precision Medicine Initiative® (PMI) is an exciting new program. Its goal is to help researchers to learn more about what affects people’s health. PMI will give new information and tools to people researching health. Their discoveries may lead to more personalized care and treatments.
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.
Our plan is that the All of Us Research Program will last for at least 10 years. We hope you will stay involved over time. If you do, researchers may better understand what causes changes in our health and what we can do about it.
If you join, you can withdraw (quit) at any time for any reason without penalty.
There are many helpful websites that may help you find a health care provider. One site that may be helpful is www.hhs.gov/programs/providers-and-facilities.
An electronic health record, or EHR, is a digital version of your medical chart. These records have information about your health and care you have received. If you see a lot of health care providers, you may have many EHRs. Your health care providers, pharmacists, medical labs, and hospitals usually can see your EHRs.
If you have more questions, you can ask us. You can call the All of Us Research Program Support Center at (844) 842-2855. You can email us at help@joinallofus.org. Or you can speak with someone in person at one of our affiliated health care provider organizations or other program partner sites.
About the All of Us Research Program
The All of Us Research Program is a large research program. The goal is to help researchers understand more about why people get sick or stay healthy. The All of Us Research Program is part of the Precision Medicine Initiative®.
We hope that more than one million people will join the All of Us Research Program. People who join may share information about their health, habits, and what it’s like where they live. By looking for patterns in this information, researchers may learn more about what affects people’s health.
The All of Us Research Program will last for 10 years or more. This will allow researchers to study health over time.
If you decide to join the All of Us Research Program, you will be contributing to an effort to improve the health of generations to come. You also may learn about your own health.
The National Institutes of Health (NIH) runs the All of Us Research Program. There are many groups helping NIH. There is a Data and Research Center that stores the information you contribute. There is a biobank that stores samples. There is a Participant Technology Systems Center that creates tools for you to connect with us online. There is a Participant Center and numerous health care organizations that are working with us to help you sign up. Learn more about our partners on our website:
https://www.nih.gov/AllofUs-research-program/program-components
Eligibility
No. All of Us is a research program. It is not medical care. You do not have to have health insurance to join.
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.
Only people who currently live in the United States can join. As long as you are not planning to move to another country soon, you are welcome to sign up.
Some All of Us Research Program activities happen online. You will need to use a computer, tablet, or smartphone to complete them. If you do not have your own, you can use an All of Us Research Program kiosk at a participating health clinic or drugstore. You can also visit the All of Us Research Program website from a computer at your local library.
If you do have a smartphone, you can download the All of Us Research Program app. It is free and is available for both iOS and Android phones. If you download the app, you can complete some of the research activities right there.
No, you can use a mobile phone number to join the All of Us Research Program.