Frequently Asked Questions
What is the All of Us Research Program?
Northwestern Medicine is a partner of the All of Us Research Program in Illinois. 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 or more 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.
Who is eligible to join?
- Adults 18 and older with legal authority and decisional capacity to consent
- Currently residing in the United States or a territory of the United States
What do I need to do to join?
The All of Us Research Program is now enrolling at Northwestern Medicine. There are four ways to join:
- Sign up with your contact information here. We will guide you through the enrollment process and schedule your in-person visit.
- Visit the All of Us Research Program national website joinallofus.org to register and consent. Once you choose Northwestern, we will contact you to schedule your in person visit.
- Download the All of Us app on iOS and Google Play.
- Give us a call at 312-695-6077, or email us at email@example.com
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.
What will you do to protect my 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.
Where are you located?
Northwestern All of Us Research Program has 3 convenient, Participant Center locations:
- Northwestern Memorial Hospital (Downtown Chicago), Galter Pavilion, Suite 15-100, 675 N St Clair St, Chicago, IL.
- Northwestern Delnor Hospital (Western Suburbs), 302 Randall Rd., Suite 209, Geneva, IL.
- Northwestern Medicine (Northern Suburbs) location coming soon!
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 one of our participant centers. At the participant 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 a All of Us Research Program representative at Northwestern Medicine (NM) about your participation in the program at our participant center located here. You can also call the Northwestern Medicine All of Us Participant Center at 312-695-6077.
Is joining a one-time activity or ongoing?
Our plan is that the All of Us Research Program will last at least 10 years. You will receive updates from Northwestern Medicine 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 one of the Northwestern Medicine All of Us Participant Centers. 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, like 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?
If we ask you in the future to go to an All of Us Participant Center to be physically measured and give blood/urine samples and you decide to do it, we will offer you a one-time $25 gift card.
Is there parking for my scheduled visit?
Complimentary parking is available at the following locations for the All of Us Participant Center at Northwestern Medicine Galter Pavilion located at 201 East Huron St, Suite 12-160. Please bring your ticket for validation. We do not reimburse for other travel expenses.
Parking A: 222 E Huron St & Parking C/D: 321 E Ontario St.
Parking is free at our Northwestern Delnor Hospital (Western Suburbs) and Northwestern Grayslake Outpatient Center (Northern Suburbs) Participant Centers.
Remember, your personal information is kept confidential, and participation in research is always voluntary. This website is maintained by Northwestern Medicine.
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