Blog PostsJun 30, 2022

All of Us Research Program. A big moment for equality in Health Research

The Spina Bifida Association (SBA) was pleased to host Karl Cooper with the American Association on Health and Disability to talk about the National Institutes of Health (NIH) All of Us Research Program.

A new kind of research program. The goal of All of Us is to collect health data from over a million people, including those who have not been well represented in the past. Researchers will use the data to study many different conditions, including cancer, diabetes, depression, asthma, and other diseases. When scientists understand what makes us all unique, they can work on uncovering patterns and designing more personalized care. The research could also lead to future medical breakthroughs.

A call to action. During his presentation, Karl explained that one of the best ways the SB community can work toward a healthier future is to give doctors and health researchers the information they need to personalize care. He talked about precision medicine as an emerging approach for disease treatment and prevention that considers individual variability in lifestyle, socioeconomics, environment, and biology. It is a radical shift in how each of us can receive the best care possible based on our unique makeup.  

Karl walked through the steps to become involved in the All of Us Research Program and identified the benefits to enrollment. The message was clear: by participating in the All of Us Research Program, the Spina Bifida (SB) community can help empower researchers to better understand what makes us unique.

A transformational approach to participation. Participants in the All of Us Research Program will be true partners, not patients or subjects. As a partner you will be involved in every step of program development including:

  • What data is collected
  • What lab analysis are done
  • What research is conducted
  • How data get returned.

A promise to participants. It was clear this isn’t just any research study. All of Us is an opportunity to learn about your own health, fight disease, and improve the health of future generations. It is also an opportunity, if you so choose, to meet others like you, perhaps even join some to propose and do research.

Join a movement. This is an opportunity to join a historic movement to bring health research to your community. Join the more than 500,000 individuals already enrolled and help to ensure that the SB community is well represented. 

To learn more, we invite you to view the All of Us presentation given to the SBA Adult Advisory Committee.
Or visit the
All of Us website where you will learn Participation is simple. Your contribution is powerful.