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Frequently Asked Questions

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 identifying better ways to keep us healthy, and they are discovering new ways to treat diseases.

  • 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, 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.

What is 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 will 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
Participation
  • If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand why people get sick or stay healthy. 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 medicine or information about how much of a medicine is right for each person

    Also, you will be able to see your All of Us Research Program information, which might be interesting to you. You may also learn about your health. If you choose, you will be able to share your All of Us information with your health care provider.

  • The All of Us Research Program is not medical treatment. You will not get direct medical benefit from taking part in the All of Us Research Program.

    That said, you may indirectly benefit from taking part in the All of Us Research Program. For example, we will give you ways to see the information you share with us and the information we learn about you. This information may be interesting to you. You may learn about your health. If you choose, you will be able to share your All of Us Research Program information with your health care team. You will have the option to learn about additional research opportunities. Finally, you will be helping researchers make discoveries that may help future generations.

  • There are three ways to join:

    Because All of Us is research, you will be asked to complete an informed consent process. This process tells more about what is involved and the risks and benefits of joining.

  • If you decide to join the All of Us Research Program, 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 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 samples, like blood or urine, at the appointment.

  • 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.

  • 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.

  • Yes, you need an email address to join the All of Us Research Program.

  • Yes. It is free and is available for both iOS and Android phones.

  • 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.

  • 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.

  • 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.

  • You can join the All of Us Research Program even if you are in other health studies.

    If you are already in another study, you may want to talk with your health care team before joining the All of Us Research Program. The All of Us Research Program is not a study, so you should still be able to join.

  • Instead of focusing on just one disease or condition, the All of Us Research Program will help a lot of researchers study many different things about health. The All of Us Research Program is also unique because it will last for at least 10 years. It will include participants from lots of different backgrounds.

  • Joining the All of Us Research Program is free and won’t cost you anything more than a little bit of your time. All activities are free. There are no costs to you or your insurance.

    If you use the All of Us Research Program app on your smartphone, it will count against your data on your phone plan. You can set the app to use only Wi-Fi to avoid this.

  • If we ask you to be physically measured and give samples and you decide to do it, we will offer you one-time compensation of $25. It may be in the form of cash, gift card, or electronic voucher.

    Your information will 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.

  • 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.

  • There are many helpful websites that may help you find a health care provider. One site that may be helpful is https://www.hhs.gov/programs/providers-and-facilities.

  • No, but you can choose to share your information with your health care team.

  • 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.

  • If you decide to join the All of Us Research Program, you get to choose how much you participate. We are thankful for your involvement at any level. We will ask everyone who joins about their health, family, home, and work. We may also invite you to do other activities, but you do not have to do them.

  • 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.

  • 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.

  • We take your privacy seriously. We will take great care to protect it. If you receive follow-up care because of the program, your insurance may be billed.

    If there is a data breach, insurance companies 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.

  • 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.

  • Yes, you can share your All of Us Research Program information with anyone you choose. For example, you can share your information with your health care team. You can share your information with your family or loved ones. You will be able to access your information online through the All of Us Research Program Participant Portal.

  • Unless you withdraw (quit), there is no limit on how long your health data will be stored and used for research. Your data may be useful in improving health for generations to come.

    You can decide to withdraw at any time. However, if researchers already have your data or samples for their studies, we at All of Us cannot get it back. Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.

Physical Measurements and Samples
  • A sample is blood, urine (pee), saliva (spit), or other material from your body. We may invite you to give samples as part of the All of Us Research Program. You can say yes or no.

  • At this time, we are collecting blood and urine (pee) samples. We may ask for a saliva (spit) sample, too.

  • Samples and physical measurements such as height, weight, blood pressure, and heart rate are ways to understand both health and disease. All the data collected will be valuable for researchers. Researchers will study things in samples like chemicals, biomarkers, and DNA. Chemicals include things like medications or drugs. Biomarkers are signals your body gives off. Researchers may also want to study your DNA. DNA is in your blood and other samples. Genes are made of DNA. You will be able to choose if you want to see results about you or your samples.

  • Yes. Your samples may be tested for medications and drugs. We will use this information for health research. We will not use it for criminal prosecution.

  • If we ask you to have physical measurements and give samples, you will have to go to a place that is participating in the All of Us Research Program. These places are usually health clinics or drugstores. We will give you a list of places close to where you live where you can go. We are just getting started, so we may not have a partner near you today, but we have many new locations planned.

    In the future, we may offer home visits in limited cases. In general, we will offer home visits only to people who have limited mobility or are too sick to travel.

  • Your samples will be sent to a secure lab. Currently, the National Institutes of Health has a partnership with the Mayo Clinic, based in Rochester, Minnesota. The Mayo Clinic will be the storage lab for the All of Us Research Program.

    Except if you withdraw or there are limits imposed by the law, there is no time limit for how long we will store your samples.

  • You get to choose how much you participate. We are thankful for involvement at any level. We will ask everyone who joins about their health, family, home, and work. We may also invite you to do other activities, but you do not have to do them.

  • No. If you decide to join, your information will be available for many research studies.

  • Probably yes. It depends on the illness you have. If you have a blood disease or have had a transfusion, you may need to check with your health care team before giving a blood sample.

    If you have donated blood or had a blood draw earlier in the day, you may need to reschedule your blood sample appointment.

  • 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.

Withdrawing from the All of Us Research Program
  • You can decide to withdraw (quit) at any time. You can tell us through the app or website. You can call us toll free at (844) 842-2855.

    We will stop collecting information and destroy your samples. However, if researchers already have your data or samples for their studies, we at All of Us cannot get it back. Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.

    If you withdraw and want to join again in the future, you will need to give us your information and samples again.

  • If you decide you want to withdraw (quit), you can tell us through the app or website or by calling us toll free at (844) 842-2855.

    We will stop collecting information and destroy your samples. However, if researchers already have your data or samples for their studies, we at All of Us cannot get it back. Also, we will let researchers check the results of past studies. If they need your old data to do this work, we will give it to them.

  • You may join again at any time. However, you will need to give your information again if you rejoin. We may also ask you to give your samples and measurements again. This is because we destroy your samples when you withdraw (quit).

Privacy
  • 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.

  • If you join the All of Us Research Program, there are a few times when we might need to give out your name or other information about you. For example:

    • We may give out information about you to protect your health or the health of others, including:
      • If we learn or suspect that you are being abused
      • If we learn or suspect that you are abusing, are neglecting, or have abandoned someone who depends on you for care, like a child or dependent adult
      • If we learn that you plan to harm someone
      • If we learn that you have certain diseases that could be transmitted to others
    • We will give out information to meet U.S. research laws and regulations. One requirement of doing research is that we let officials from the U.S. government review our work. This is to make sure we are doing things the right way.
  • We will take great care to protect your information. Here are a few of the steps we will take:

    • Information we have about you 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. 
    • In order to work with your health information, researchers must sign a contract stating they will 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.
  • We may email you or call you to schedule an appointment. We may send you emails about the All of Us Research Program. We may email or call you to tell you about other opportunities to participate in research. We may reach out to ask you for updates or additional information about your health.

    You can tell us if and how often you want to be contacted.

  • No, we will never sell your email address or phone number.

  • We will not let your insurance know if you join unless you are injured. We do not expect you to be injured. Answering surveys, being measured, and giving samples are very safe activities. They are unlikely to cause injury. But if you are injured because of the All of Us Research Program and you have insurance, your insurance may be billed.

  • We will not ask you about your residency status. We cannot share your residency status, because we will not know it.

  • We will not ask you about your citizenship status. We cannot share your citizenship status, because we will not know it.

  • We will create a database on the All of Us Research Program website. Everyone can use the database to make discoveries. The information in the database that anyone can see will be about the group of participants. For example, it might tell the average age of the people who have joined the All of Us Research Program. It will not include information about individual people. It will not include your name or other information that directly identifies you.

    Only researchers approved by the All of Us Research Program will be allowed to see data from individual participants. These researchers may be from anywhere in the world. They may work for commercial companies, like drug companies. The research may be on many different topics.

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