Frequently Asked Questions
What is the All of Us Research Program?
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?
- 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 firstname.lastname@example.org
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 locations:
How much of my time will be required to fully participate?
Can I talk to someone face-to-face about joining?
Is joining a one-time activity or ongoing?
What will the All of Us research program ask of me as a participant over time?
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?
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 inventions will be the property of the researchers who develop them.
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 – see attachment for more detail.
Parking is free at our Northwestern Delnor Hospital, and Northwestern Vernon Hills Primary Care 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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