The National Institutes of Health (NIH) is leading one of the world’s largest health research efforts to personalize medical treatment for people of all backgrounds. Through the NIH’s All of Us Research Program , the agency is seeking one million volunteers to build a database of health and genetic information to speed up research breakthroughs intended to improve care.
“This will lead to significant advancement in our scientific understanding of health and how we can individualize and tailor patient care, person by person,” said Zeno Franco, PhD, who is leading the All of Us Research Program’s efforts for the Froedtert & the Medical College of Wisconsin health network, along with Jeffrey Whittle, MD. “The goal is to be able to better prevent and treat a variety of health diseases, disorders, syndromes and conditions.”
The Froedtert & MCW health network, as well as Marshfield Clinic Health System and the University of Wisconsin School of Medicine and Public Health were selected by the NIH as partner centers in the program. The Froedtert & MCW health network, with Versiti, seeks to enroll 33,000 participants in southeastern Wisconsin in five years.
Treatments guided by precision medicine
A treatment is usually based on results from previous research and clinical trials, but, historically, only a small percentage of participants have been from minority communities. A particular therapy, medication or treatment dosage may work better for some populations than others. Genetics information is also increasingly important for targeted interventions of complex diseases such as cancer; for example, tumor targeting is often driven by an individual’s genetic profile.
“We want the one million participants to reflect diversity,” Dr. Franco said. “This will help us see many more patterns between genetics and health outcomes. Sickle cell is an example of a disease we would like to be able to treat better. We hope that through All of Us, researchers will be able to study the genetic profiles of large groups of people affected by this disease and relieve the suffering it causes in some communities. The Milwaukee area is urban and diverse. We have the opportunity to make sure no one is underrepresented in this effort.”
Accessing your health and genetic data
The All of Us Research Program opened for enrollment in May 2018. To participate, you contribute physical measurements, blood and urine samples, as well as answer surveys about your health, lifestyle and family history. This process usually takes just over an hour.
Eventually, through the participant portal, you will be able to access your genetic data and test results and learn more about your health and All of Us discoveries over time. If you are found to be at risk for a particular disease or condition, you can choose to be connected with a genetic counselor.
“You can benefit from this information if you choose to, and you will help create a healthier future for generations to come,” Dr. Franco said.
Only NIH approved researchers can access the data, and personal identifiers are removed. According to the NIH, researchers must register with the program and receive approval to access the data. All researchers involved in the project are bound by the NIH’s data usage privacy and security rules.
How to register as an All of Us participant:
1. Create an account
2. Review the consent section
3. Fill out the enrollment and consent forms
4. Choose if you want to share your electronic health records. If you choose not to share this information, you can still participate by answering the health surveys.
5. Visit a partner center. As a participant, you may be invited to share your physical measurements (blood pressure, height and weight) and provide biosamples such as blood and urine at a partner center location that is convenient for you.
Anyone over the age of 18 who is living in the United States can join the All of Us Research Program. The NIH expects children will be able to enroll in the coming years.
To learn more visit: froedtert.com/all-of-us