Frequently Asked Questions

What is the All of Us Research program?

UW-Madison is a partner of the All of Us Research Program in Wisconsin. All of Us is an exciting new initiative from the National Institutes of Health (NIH). The mission is simple: to speed up health research and medical breakthroughs.

 

The All of Us Research Program is asking one million people to come together to create the largest health database ever. Researchers can use this data to better understand disease. This may create a healthier future for generations to come.

Why should I join?

If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand what makes people sick and to develop new treatments. 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 as an individual.

 

Also, you will be able to see your information, which might be interesting to you. You may also learn about your health. If you choose, you will be able to share your information with your doctor.

What do I need to do to join?

All of Us – UW is currently enrolling participants who are 18+ and have received care at a UW Health facility or from a UW Health provider at any time.

 

There are three ways to join:

 

  • Visit our webpage “How to Join” to register at the All of Us Research Program national website joinallofus.org and make an appointment to visit one of our clinic sites.
  • You may also call our local team toll free at 888-294-2661.

 

Because All of Us is a research program, 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.

Will my health information be safe? How do you plan to ensure privacy? What about data security?

All of Us takes privacy and security concerns very seriously and abides by the PMI Privacy and Trust Principles and the PMI Data Security Policy Principles and Framework.

 

The program has engaged teams of experts to conduct rigorous security testing, establish safeguards against unintended release of data, and set penalties for the unauthorized re-identification of participants.

 

We have ensured that all systems meet the requirements of the Federal Information Security Management Act (FISMA), and tested all systems for any vulnerabilities. We continue to perform ongoing security tests to protect participant data.

How much of my time will be required to fully participate?

The consent forms and health surveys may take about 30 minutes to an hour to complete. You can complete the consents and surveys online before you come in for a visit – or when you come in for a visit at our enrollment center. At the enrollment center, we will ask you to provide physical measurements and biosamples (blood and urine), which will take an additional 30-45 minutes.

Can I talk to someone face-to-face about joining?

Yes, you can talk to an All of Us Research Program representative at UW-Madison about your participation in the program at our participant center located at UW Hospital and Clinics. You can also call us at 888.294.2661 or email us at allofus@hslc.wisc.edu.

Is joining a one-time activity or ongoing?

The All of Us Research Program is planned to last at least 10 years. You will receive updates from UW-Madison and from the national All of Us Research Program. 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 decide to join, you can withdraw (quit) at any time.

What will the All of Us Research program ask of me as a participant over time?

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 will ask for access. We will ask you to go to the participant center at UW Hospital and Clinics. At this appointment we will measure your weight, height, hips, and waist, as well as take your blood pressure and heart rate. We will ask you to give samples of blood and urine at the appointment.

 

We may contact you to answer additional surveys from time to time. You can choose to answer the surveys or not. We may also contact you periodically to ensure that your contact information is up-to-date in our system.

Will I be paid?

At the completion of your appointment to be measured and give blood and urine samples, we will offer you a $25 payment.

 

Your information will be used by 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 innovations will be the property of the researchers who develop them.

Contact Us

 

750 Highland Avenue
Madison, WI 53705

 

Phone: 888.294.2661
Email: allofus@hslc.wisc.edu