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, researchallofus.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.
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.You can search for clinical trials at ClinicalTrials.gov.
We always recommend that you talk to your health care provider about your health care needs and concerns.
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.
Depending on your age, we plan to look at different types of information in your DNA. We expect this will include information about:
As we learn more about DNA, we may be able to add more types of DNA results to this list.
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.
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.
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 [email protected]. Or you can speak with someone in person at one of our affiliated health care provider organizations or other program partner sites.
Yes. We respect that tribes are sovereign nations, with their own governments and laws. We have had ongoing conversations with tribal leaders and members across the country. These meetings helped us learn more about their views so we can support research in a way that best protects and benefits participants and American Indian and Alaska Native communities. Learn more about our work with Tribal Nations.
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
No. All of Us is a research program. It is not medical care. You do not have to have health insurance to join.
Eligible people 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.
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.
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.
To join, visit the All of Us Research Program website, go.joinallofus.org. You can also download the All of Us Research Program app (iOS version, Android version).
You will be asked to sign up with your email address or mobile phone number. Because All of Us is research, you will also 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 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.
No. If you decide to join, your information will be available for many research studies.
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.
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 research studies.
If you are already in other health research studies, 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 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, but you can choose to share your information with your health care team. In general, All of Us will not communicate directly with your health care team.
If you are an adult participant who receives health-related DNA results, we may communicate with your health care team. But we will only communicate directly with your health care team if you ask us to. If you get health-related DNA results from All of Us, like hereditary disease risk or medicine and your DNA results, you can ask All of Us to share those results with your doctor or other health care provider. You can also print your results and bring them with you to your next medical appointment. You can also show them to your provider on a smartphone.
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.
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) and tell us to make your health data unavailable for new studies, there is no limit on how long it 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. 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 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.
If you choose to leave the program, we will stop collecting information. You can decide what you want to do with the information and any samples you have shared with All of Us. 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 create a new account, complete the consent process, and begin the program again.
You may join again at any time. However, you will need to create a new account, complete the consent process, and begin the program again.
Participants who give saliva using the All of Us Saliva Collection Kit will not be paid. If we collect your blood and physical measurements during an in-person appointment, you will receive $25 to thank you for your time and effort to travel to the appointment.
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 is the storage lab for the All of Us Research Program.
There is no time limit for how long we will store your samples. The exceptions are if you withdraw and tell us to destroy your samples and if there are limits imposed by law.
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.
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 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.
It is your choice as an adult participant whether you want All of Us to give you your DNA results. To get your DNA results, there are a few steps you need to take:
Once you provide your samples, it may take a few months or even years for All of Us to check your DNA.
When we are ready to check your DNA for a specific type of result, we will give you more details to help you decide if you want to get that DNA result. If you decide that you do, you will then get those DNA results when they are ready.
*You can participate in All of Us without completing steps 4-6, but we generally will invite you to provide blood, urine, and/or saliva samples only if you have completed these steps. You need to provide a sample to get DNA results. We also encourage you to complete all of the surveys available in your account.
Depending on your age, we plan to look at different types of information in your DNA. We expect this will include information about:
As we learn more about DNA, we may be able to add more types of DNA results to this list.
When you get your DNA results will depend on when you complete the necessary steps and when you submit your sample. Since All of Us plans to check your DNA in a variety of ways, you could get some DNA results in less than a year but then wait more than a year or longer to get other DNA results.
Please check your All of Us account regularly for updates.
Once we are ready to generate a DNA results report for you, we will contact you through your All of Us account. We also will send you an email or text message. When we contact you, we’ll ask you to log in to your All of Us account so you can learn about each of the DNA results we are ready to check for. You can then decide if you want those results. You can decide “Yes,” “No,” or “I’m not sure right now” for each type of DNA result. You can always change your mind later.
If you decide “Yes,” we will analyze your DNA for that type of result. You will get access to a personalized report when it is ready. How quickly the report is ready for you will depend on the type of DNA result. Some reports can be ready almost immediately while others may take a few weeks to a few months.
If you decide “No,” we will not analyze your DNA for that type of result. If you decide “I’m not sure right now,” we will not analyze your DNA for that type of result until you tell us you want us to.
You can expect to get a new message each time we are ready to generate a new DNA result for you. Please make sure that your contact information is up to date in your All of Us account so you don’t miss our message. Please note that for your privacy, DNA results are not available in paper form, and All of Us will not mail any DNA results to your mailing address.
Yes. Genetic counseling is available to all participants of the All of Us Research Program. Genetic counselors are specially trained to help people understand their DNA results. Appointments are free, confidential, and take place on the phone. You can choose to speak with a counselor who speaks Spanish. We also provide HIPAA-compliant interpretation in more than 200 languages. This includes American sign language.
All of Us is a research program. We analyze DNA for research purposes. As we analyze your DNA, we can check it for information about your genetic ancestry and traits and for information that may affect your health.
The purpose of clinical DNA testing is to help your doctor or health care provider diagnose or treat you. All of Us is not a health care provider and does not provide clinical DNA testing.
If you receive health-related DNA results from All of Us, those results are not a diagnosis. Only a doctor or health care provider can diagnose you with a health condition and determine how to treat you. If you are concerned about your DNA results, it’s always good to discuss them with your doctor or health care provider. Using their professional training, they may want to take additional steps. This may include ordering a clinical DNA test or sending you to a specialist who can order a clinical DNA test to confirm the results.
If you do not have a doctor or health care provider, you may ask an All of Us genetic counselor to help you find one. Start by contacting our Support Center at (844) 842-2855 or [email protected].
The All of Us Research Program stores blood, saliva, and urine samples in a secure lab called a biobank. We store DNA information taken from the samples in a secure database at our Data and Research Center. The information we share with researchers does not contain your name or other information that could directly identify you. Also, researchers who want to study samples or DNA information must agree to strict rules before we will share samples with them.
All of Us will not sell your health information to anyone. We also have privacy and security safeguards in place to protect your information and your identity.
Here are a few examples of how we keep your data safe.
Only researchers who have completed special training can access All of Us participant data. Those researchers may work for universities, medical centers, or nonprofits. Everyone who uses All of Us data for research has to follow the same privacy and security rules. They must agree to protect the privacy of participants. We require researchers to describe their research projects and how they will use the data. We share descriptions of all research underway.
We have a list of all active research studies that are using All of Us data. You can search this list of studies by the researcher name and their description of the project.
All of Us is designed to protect the security of our participants’ data. There are laws that help prevent your DNA information from being used against you, but there is always a chance it could happen.
The National Human Genome Research Institute has more information about these and other laws. The site includes information about exceptions to the laws.
We also have Certificates of Confidentiality from the U.S. government. They will help us fight legal demands (such as a subpoena or a request from federal, state, or local law enforcement) to give out information that could identify you.
If you withdraw from the All of Us Research Program:
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:
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:
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 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 eventually 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.
WEAR supports the All of Us Research Program by collecting health and behavior data from Fitbit devices. As part of the WEAR study, you may receive a new Fitbit at no cost. This will allow you to share data such as resting heart rate and number of steps. This will aid in our research.
The goal of WEAR is to improve access to wearable devices. The study aims to reach diverse groups in the United States. These are groups that are often left out of research. WEAR looks at things like:
You may be selected for WEAR if you are historically underrepresented in biomedical research based on any of these categories. Number of devices is limited, so we cannot guarantee an invitation to this study even if you might otherwise be eligible. You will not be invited to WEAR if you have already connected a wearable device to the All of Us Research Program.
No, participants were chosen on a first come, first serve basis. However, we may invite you to join in other ways in the future.
The risks of joining the WEAR Study are similar to the risks of participating in the All of Us Research Program. You can review those risks in the Consent to Join the All of Us Research Program. You can find this form in the Agreements area of your account. There is also a risk to your privacy whenever you use an app, website, fitness tracker, or smartwatch. To be part of the study, you agree to share different types of data in your All of Us record. If there is a data breach, there may be additional risk to your privacy because of the amount of data in your All of Us record.
Additionally, to participate in the WEAR Study, you’ll be asked to set up a Google account or connect a Fitbit or Google account you already own. If you use your Fitbit devices and services with your Fitbit account, your data will be handled by Fitbit’s Terms of Service and Privacy Policy. Please read them carefully. You can read them here: Privacy Policy and Terms of Service. Here are some key points to keep in mind:
If you don’t already have a Fitbit or Google account, you will be asked to set up a Google account. When you set up a Google account for Fitbit, you will be asked to agree to Google’s Terms of Service and Privacy Policy. Please read them carefully. You can read them here Terms of Service and Privacy Policy. Here are some key points to keep in mind:
In addition to what is mentioned above, you may experience reduced battery life of your mobile device by connecting the Fitbit device using Bluetooth. It is recommended that you connect to your Wi-Fi network before using the participant portal. Please also note that data and message charges may occur as a result of taking part in this study. You must also maintain good hygiene while wearing your Fitbit device to avoid developing skin rash, as could happen with any wrist worn accessory.
Fitbits have a heart rate tracking feature called PurePulse Technology that may pose risks to users with certain health conditions. Consult your doctor prior to use of such products if you (1) have a medical or heart condition, (2) are taking any photosensitive medicine, (3) have epilepsy or are sensitive to flashing lights, (4) have reduced circulation or bruise easily, or (5) have tendonitis, carpal tunnel syndrome, or other musculoskeletal disorders.
Fitbit devices should not be used for medical purposes. Consult your health care professional about any questions or health issues you may have.
Only the All of Us program and approved researchers will be allowed to see your data. Your WEAR Study data will be combined with the rest of your All of Us data. These researchers may be from anywhere in the world. They will study many different things. They may work for companies, like drug companies. However, Fitbit and/or Google will also have access to your Fitbit data as outlined in Fitbit’s Terms of Service and Privacy Policy and Google’s Terms of Service and Privacy Policy depending on your account type you used for Fitbit.
Researchers may use these data to learn more about lifestyle behaviors, health and usage of wearable sensors. This information, in addition to other data you have shared with the program, can give researchers a more complete understanding about your lifestyle habits.
Yes. You can choose whether or not you want to take part in the WEAR Study. If you say no, you can still participate in other parts of All of Us. We respect whatever you decide.
Please use the Fitbit device we’ve provided. Do not give it to anyone else. It is important that you are the one who wears the device so that researchers can combine it with the other information you have shared. To participate in WEAR you can use the account for Fitbit you already have.
Yes, you can connect your Fitbit device to the All of Us Research Program through your participant account. If you get invited to receive a new Fitbit and you agree, we would like you to wear the new Fitbit device that we provide to you. Please do not give it to anyone else.
We hope all participants who get Fitbit devices will wear them and share their data with the program. However, you can stop wearing your Fitbit device at any time.
You can decide which data from your account for Fitbit you want to share with the All of Us Research Program when you connect your account for Fitbit to All of Us. These data include things like sharing steps, heart rate, weight, and sleep.
No. If you decide to withdraw, you do not have to return your Fitbit and you will never be asked to pay for it.
If we stop collecting data or you decide to withdraw from the project, you do not have to return your Fitbit to us. You can give your Fitbit away if you choose to. Before you give it away, please disconnect your Fitbit from your All of Us Research Program account and restore your Fitbit device to factory settings.
You will be able to choose between the Fitbit Charge™ tracker or Fitbit Versa™ smartwatch. You may be able to choose the color, and will receive the standard band that comes with the device. The number and type of devices are limited and will be given on a first-come basis.
No. The All of Us Research Program will not sell your information and Fitbit does not sell your Fitbit data. Google also does not sell your personal information, as outlined in their Privacy Policy. Researchers may use your de-identified data to study many topics. The researchers may come from different places, including drug companies. Before getting access to All of Us data, researchers must share why and how they will use the data.
You can find detailed information about different Fitbit devices and their functionality here.
All of Us will not collect or store your GPS data or data about your friends. However, Fitbit and/or Google may have access to this data depending on the account type you used for Fitbit. Data that Fitbit and Google collects and how it is used is outlined in their Terms of Service and Privacy Policy.
For support questions, please contact the Support Center at (844) 842-2855 or [email protected].
Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. We rely on our mental health and well-being every day to:
Mental illnesses are medical conditions, like heart disease or diabetes. Mental illnesses can change how we think, feel, and act, or a combination of these. Mental illnesses may coincide with challenges in social activities, at work, or with family.
Mental Illnesses can be caused by many things. These include life stresses, trauma, where you live or grew up, genetics, other medical illnesses, and family health history.
Mental illnesses affect millions of people each year. At least one in five U.S. adults is living with a mental illness. If you don’t experience mental illness personally, there’s a good chance a friend or loved one does.
Mental illnesses affect people no matter their age, gender, geography, income, social status, race, ethnicity, beliefs, sexual orientation, or other traits. Studies show that risk for mental illness is higher in some groups. These include individuals who experience discrimination, violence, and other traumatic events, as well as people with chronic illnesses, like cancer or heart disease.
Mental illnesses can be treated. Treatment includes medication, talk therapy (also called psychotherapy), or both.
There also are ways to manage mental illness. Some of these include eating a healthy diet, getting enough sleep and exercise, and learning ways to manage stress.
Many people do not get the help they need. There are many reasons for this. Some include:
To learn more about treatment for mental illnesses:
Mental health is an important part of overall health and well-being. Taking care of our mental health is just as important as taking care of our physical health.
All of Us wants to make sure that mental health research includes everyone. When everyone is included, more people can live healthier lives.
Researchers are already using All of Us data from participants like you to learn more about mental health and well-being. Here are examples of studies that are happening now:
Search our Research Projects Directory to learn about these and other studies. Go to https://www.researchallofus.org/research-projects-directory.
If you or someone you know is experiencing emotional distress or a mental health crisis, talk to someone now. Call or text 988.
The 988 Suicide & Crisis Lifeline gives free and confidential emotional support 24 hours a day, 7 days a week. For TTY Users, use your preferred relay service or dial 711 then 988.
The 988 Suicide & Crisis Lifeline also can help you:
For more mental health resources, visit the following:
The two surveys include questions about the following topics:
Yes. Your survey answers are confidential. In some instances, the online survey will let you know about mental health resources. This happens automatically. No one will know how you answer the questions.
Your answers will be used by researchers who want to study mental health and well-being. When we add your answers to our database, we remove information that can identify you, like your name.
The only time someone can see your answers is if an All of Us staff member helps you complete your survey in person or over the phone. All of Us staff members are trained to help participants answer these surveys.
If an All of Us staff member helps you take the survey, they will read the questions to you and enter your responses into a secure online system. When you are done taking the survey, the staff member must submit your answers into the online system. After they submit your survey, they cannot see your answers anymore.
Federal law requires All of Us staff members to keep your answers confidential. There are exceptions. Depending on the laws where you live, the staff may have to tell someone outside the All of Us Research Program if they learn or suspect:
If the staff member must report this information, they will explain this to you before they help you complete this survey.
All of Us will not share your specific answers with anyone else. We know that all the information you share with All of Us is personal. We follow strict rules to protect your information.
There are exceptions to this when an All of Us staff member helps you take the survey. Depending on the laws where you live, the staff may have to tell someone outside the All of Us Research Program if they learn or suspect:
If the staff member must report this information, they will explain this to you before they help you complete this survey.
We will add your answers to our public research database. This public database is called the Data Browser. The Data Browser does not include your name or other information that directly identifies you. Everyone, including All of Us participants, can look at information in the Data Browser.
We also will add your answers to our scientific database. This database has more information than the public Data Browser. Before we add your answers to the scientific database, we remove any information that directly identifies you. This means researchers cannot see information like your name and address.
All of Us controls who has access to the scientific database. Before researchers can use this database, they must take special training. They also must sign a contract. In the contract, they must agree they will not try to find out who you are. This contract also says how they can and cannot use your data.
Learn about research that is using All of Us data in our Research Projects Directory.
The All of Us Research Program asked a group of experts to help develop the surveys. This group includes experts in mental health, survey design, and diverse life experiences and viewpoints. These experts developed the surveys over a two-year period. During this time, they got feedback from All of Us community partners and All of Us Participant Ambassadors. Mental health experts from other organizations, including the National Institute of Mental Health, also provided input and recommendations.
All questions in the All of Us surveys come from other surveys that are already being used in health research, health care, or both.
The experts assigned to develop the surveys started with 613 surveys! After much research, they decided to use questions from nine of those surveys to create the All of Us surveys.
To narrow it down from 613 to nine surveys, the experts considered several factors. Here are a few of those factors:
According to our experts, each of the final All of Us surveys on mental health and well-being will:
The topics included in the surveys are listed in the table below. The table also shows the source of the survey questions and the reasons why the questions were included in the surveys.
| Question Topic | Question Source | Reason for Including in Surveys |
| Personality traits | Big Five Inventory | Questions ask about personality traits that are most studied in health research. |
| Current symptoms of depression | PHQ-9 | Depression is a leading cause of disability worldwide. The PHQ-9 is the most widely used survey to measure current symptoms of depression. Doctors, other health care providers, and researchers use this survey. |
| Symptoms of depression over one’s lifetime | UK Biobank-Mental Health Questionnaire | Depression is a leading cause of disability worldwide. These questions can help increase understanding about a person’s experiences with depression. Questions ask about age when symptoms first started, how long symptoms lasted, and whether symptoms happened after giving birth. |
| Self-harm and other suicide-related behaviors | SITBI Short Form | Suicide is the second leading cause of death among young people and 12th cause of death overall. Death by suicide and suicide attempts have been increasing in recent years. These questions ask about self-harm, thoughts of suicide, and suicide attempts. |
| Adverse childhood experiences | BRFSS Adverse Childhood Experience Module | ACEs are linked to many mental and physical health issues. Examples of childhood ACEs include living with someone who was a problem drinker, used illegal drugs, or abused prescription drugs. |
| Experiences with adversity and trauma over one’s lifetime | UK Biobank-Mental Health Questionnaire | These questions ask about experiences with adversity and trauma after age 16. As with ACEs, these experiences have been linked to many mental and physical health issues. |
| Symptoms of post-traumatic stress | PCL-C as used in UK Biobank-Mental Health Questionnaire | This is a shorter version of PCL-C. The PCL-C is commonly used to measure symptoms that can occur in PTSD. |
| Current symptoms of anxiety | GAD-7 | The GAD-7 is commonly used to measure current symptoms of anxiety and worry. Doctors, other health care providers, and researchers use this survey. |
| Symptoms of anxiety over one’s lifetime | CIDI-5.0 | These questions ask about symptoms of anxiety of the course of one’s lifetime. |
| Changes in mood and energy levels | UK Biobank-Mental Health Questionnaire | These questions ask about specific symptoms that have been associated with bipolar disorder, an important mental illness. |
| Adult ADHD | ASRS-v1.1 | These questions ask about specific symptoms in the past six months that have been associated with ADHD. |
| Panic disorder | CIDI-5.0 | Feelings of panic are common. These questions ask if panic attacks have ever happened, when, and how often they happened. |
| Unusual experiences |
|
These questions ask about unusual experiences like hearing or seeing things that other people do not hear or see. Existing research suggests that about five out of 100 people experience these symptoms. |
| Thoughts and behaviors that are hard to control |
Adapted from:
|
These questions ask about thoughts and behaviors that may be hard to control and can cause anxiety. Examples are repeated hand washing, picking at skin, or pulling out hair. Participant answers will allow researchers to study these understudied symptoms in a diverse population. |
| Strong feelings of fear | Adapted from CIDI-5.0 | Experiencing strong feelings of fear or anxiety doing everyday activities like leaving the home alone or traveling over bridges is not uncommon. Participant answers will allow researchers to study these understudied symptoms in a diverse population. |
| Well-being | UK Biobank-Mental Health Questionnaire | These questions ask about general happiness and meaning in life. Well-being can be an important predictor of mental and physical health. |
Abbreviations
ACEs: adverse childhood experiences; ADHD: attention deficit-hyperactivity disorder; ASRS-v1.1: World Health Organization Adult ADHD Self-Report Scale, version 1.1; BRFSS: Behavioral Risk Factor Surveillance System; CDC: Centers for Disease Control and Prevention; CIDI: World Health Organization Composite International Diagnostic Interview; GAD-7: Generalized Anxiety Disorder-7; PCL-C: Post-traumatic Stress Disorder Checklist-Civilian Version; PHQ-9: Patient Health Questionnaire-9; PTSC: post-traumatic stress disorder; SITBI: Self-Injurious Thoughts and Behaviors Interview; UK: United Kingdom.
All responses to the surveys will be used for research purposes only. All of Us will not use your responses to diagnose you with an illness.
All participants who have completed the first three All of Us surveys can take the surveys. The first three All of Us surveys are The Basics, Overall Health, and Lifestyle.
Log in to your All of Us account to see which surveys are ready for you. You can find them on your dashboard. If you cannot open a survey, you may need to finish another survey first.
If you need help, please contact the All of Us Support Center. You can send an email to [email protected]. Or, you can call or text (844) 842-2855. For toll-free TTY, dial 711. The Support Center is available from 7:00 AM ET to 10:00 PM ET.
By taking these surveys, you are helping All of Us work to make sure that mental health research includes everyone. Each question you answer will help researchers:
Yes. All of Us is asking all participants to complete the surveys on mental health and well-being. Researchers need information from people who have never been diagnosed or treated for mental illnesses, too.
Participant responses are used only for research purposes. We will not use your responses to diagnose you with an illness.
Yes. It’s OK if you have been diagnosed or treated for a mental illness before. All of Us is asking all participants to complete the surveys on mental health and well being. Researchers can learn more when participants like you take the surveys.
Participant responses are used only for research. All responses are confidential and anonymous.
No. These surveys are optional. The information you share can help advance what we know about mental health and well-being in diverse populations. You can choose how much or how little you share. We hope that you will take it.
The surveys ask questions that may trigger difficult or unwanted emotions and memories or affect your mood. You can decline to answer any question.
Your answers will give researchers information they need to make new discoveries about mental health. The more questions you answer, the more researchers can learn about how our lifestyle, experiences, and background affect our mental health.
Combined with other health information from you and other participants, surveys help researchers find patterns about how our lifestyle, biology, background, experiences, and environment affect our health. They may also help researchers answer questions about how to prevent and treat a variety of mental illnesses and other health conditions.
If you take the surveys on your own, it should take you less than 10 minutes to complete each one. If an All of Us staff member helps you complete the surveys, it may take longer.
You can take the Surveys on mental health and well-beings online, in person, or over the phone. We recommend that you take the surveys in a private place where you feel comfortable answering personal questions. If you choose to take the surveys online, you can log in to your All of Us account. You will find the surveys on your dashboard. If you choose to take them in person or over the phone, an All of Us staff member will help you. They will read the questions to you and record your responses in our secure and safe electronic system.
No. Once you submit your surveys, you cannot fill them out again.
No. Once you submit your surveys, you cannot change your answers.
If you think you answered a question incorrectly, that’s OK. You do not need to do anything. Once you submit your surveys, you cannot change your answers.
The surveys are available in English and Spanish.
No. You will not be paid for completing the surveys.
The surveys will not diagnose you with any medical conditions. All of Us is a research program. We cannot give medical treatment or make a diagnosis.
After you finish the surveys, you can see your responses by going to “My Data” in your All of Us account.
The Behavioral Health and Personality survey has a section about personality. These questions come from the Big Five Inventory. If you answer all 15 questions, we can give you a personality report. The report is based on your specific answers and includes results about five personality traits.
You will need to answer all 15 personality questions in the Behavioral Health and Personality Survey.
You will be immediately directed to view your personality report as soon as you finish the survey. Here’s how to review your personality report again:
Log in to your All of Us account
The personality report includes five personality traits. Each personality trait has a range. Most people fit somewhere in the middle. Your traits can explain how you may respond in different situations. How you actually respond will depend on more than just your traits.
The five traits included are:
Precision medicine seeks to redefine what we know about what causes diseases, how diseases progress, and how individuals respond to treatment. To achieve these goals, researchers need more specific information about each person’s biology, environment, behavior, and lifestyle.
Researchers have been studying links between personality and health for decades. Researchers study personality traits to learn how they affect risk for disease, response to treatment, health disparities, and other health-related information.
Differences in personality traits have been linked to heart disease, high blood pressure, stroke, dementia, lung diseases, diabetes, and cancer, as well as some mental illnesses, substance use disorders, and suicide. Differences in our personality traits are also linked to how well we stick to our treatment plans and how we view our quality of life.
The “Big 5” is a model of personality that includes five key traits. The Big 5 personality model has very well studied and confirmed as valid. The five key traits include:
Each of these traits really falls on a spectrum or a scale. For example, the extraversion trait has extraversion on one of end of the scale and introversion on the other end. Each of us falls somewhere in between these.
Many other large studies include questions about the Big 5 personality inventory. These studies include the Health and Retirement Study, the Midlife in the United States study, the National Health and Aging Trends Study, and the UK Biobank, just to name a few.
The personality questions come from a survey called the Big 5 Inventory-Extra Short Form (BFI-XS). Several different surveys measure the Big 5 personality traits. The expert group assigned to develop the Surveys on mental health and well-beings chose BFI-XS for a few reasons:
It’s OK if you are not sure how to answer a question. For some questions, you can choose “don’t know,” “not sure,” or “prefer not to answer.” If those answer options are not available, these tips that may help you:
We understand that some of the questions in these surveys may feel too personal, be upsetting, or cause negative feelings. You don’t have to answer a question if you don’t want to. Also, you do not have to answer all the questions at one time. You can stop anytime and continue where you left off.
Here are some resources that may help if you are experiencing negative feelings:
The National Institute of Mental Health (NIMH) prefers the term “mental illness.” We met with NIMH to help us choose the best terms to use for these surveys. That said, we understand that when to use the term “illness” is still a conversation, even among experts in the field. We prefer it in our messaging because it underscores that “mental illness” is a serious health experience and not just a perceived or imagined state. We have learned that the term “condition” may minimize how important mental illnesses are from a treatment, research, and advocacy perspective. We also know the debate on the best term to use continues in the field.
