All of Us and CIDNY
We’ve partnered with the All of Us Research Program to help create a better health care future for all. CIDNY is participating because people with disabilities are so often left out of research and studies that lead to medical treatments. This is a chance to help change that.
What is the All of Us Research Program?
It’s a Program from the National Institutes of Health (NIH) that’s looking for at least one million people from across the United States to help speed up medical research. People who join will share information about their health, habits, and what it’s like where they live. By looking for patterns, researchers will learn more about what affects people’s health.
What is the purpose of the program?
Right now, health care is often one-size-fits-all. The All of Us program imagines a future where YOUR health care is tailored to YOU. The All of Us program wants to make that future possible.
How can health care be tailored to people individually?
The goal is to create a resource that allows researchers to conduct thousands of studies on health and disease. The program is expected to last at least 10 years. During that time, valuable health information from people like you will be collected and studied.
What information do participants share?
Participants answer health surveys. Some may donate DNA samples and their electronic health records. It’s up to you what you share and how much you share. The program will use the latest technology to help keep your data private.
How does the program work?
There are five main steps to the All of Us Research Program.
1. Participants Share Data
2. Data is Protected
3. Researchers Study Data
4. Participants Get Information
5. Researchers Share Discoveries
Full details can be found on their website at: https://www.joinallofus.org/together.
Who can join?
• Enrollment is open to all eligible adults over the age of 18 who live in the United States. People of every race, ethnicity, sex, gender, and sexual orientation are welcome.
• No health insurance is required. Any appointments needed to take part are free. Please note, the All of Us Research Program is a research study and does not provide medical care.
• You can be healthy, or you can have a long-term health issue. There are no limits to taking part based on your health status.
• You don’t have to speak English to join. The program has Spanish-speaking advisors to help you, and they plan to add additional languages in the future.
• Those not eligible to join at this time include people who are: in prison, unable to consent on their own, and younger than 18. All of Us hopes to include these people in the future.
• A computer, tablet, or smartphone is not required to join, but they make it easier to share your health data.
To sign up or find out more, please visit: https://www.joinallofus.org/together.