Area residents have the opportunity to assist with a historic study that could change our understanding of healthcare.
All of Us Pennsylvania researchers will be at the University of Pittsburgh at Bradford April 2-4 to work with people willing to share their medical history — and future — for the sake of better understanding of how that medical picture develops.
All of Us Pennsylvania is part of the national All of Us Research Program, organized by the National Institutes of Health (NIH).
An All of Us enrollment center will be set up from 7:30 a.m. to 2:30 p.m. April 2-3 and starting at 7:30 a.m. April 4 in nursing teaching lab room 257, second floor Nursing Suite 244, Swarts Hall.
Dr. Mylynda Massart said this is a great study to participate in for anyone who has thought about participating in research, as people will only be providing information about themselves; nothing is being done to them. For instance, they won’t be asked to try out a medication.
“It’s not terribly invasive or high risk,” said Massart. “Also, it’s the largest study of this kind ever. They’d be participating in something monumental.”
Massart, an assistant professor of family medicine in the University of Pittsburgh’s Department of Family Medicine, is a co-investigator on the All of Us Pennsylvania Research Program.
The study will look at lifestyle, environment and genetics to try to gain insight into disease and wellness. That view of medical treatment is called precision medicine.
People from every background are invited to take part.
“We want everyone from all levels, from healthy to different disease states,” Massart said. “In fact, the broader the group that we recruit, the better the data will be and more useful.”
There is an emphasis on diversity in the project, as research will be more applicable in a clinical setting if that is the case. There are many types of diversity, she explained, we can include ethnicity, geographic diversity and gender.
All of Us Pennsylvania is hoping to enroll 120,000 individuals statewide to take part, according to Massart. Forms of All of Us programs are taking place across the country.
“Currently, it’s open to anyone over the age of 18 who lives in the United States,” she said. “They do not have to be a citizen.”
She noted that the program will eventually enroll people under 18, too.
The program website — joinallofuspa.org — outlines what participation entails. To take part, registration is required, which can be done on the website.
People can schedule and appointment to visit the center set up at the university by either visiting the website or calling 800-640-4363.
Massart noted that phone number is just for people who are registering for the Pitt-Bradford center, not for other Pennsylvania centers.
Participants give two consents: a general consent for the study and an electronic medical consent that provides permission to include the individual’s electronic health record, past and future, in the study.
They will answer health-related survey questions. At the center site, they will provide blood and urine samples, and a researcher will take physical measurements.
Participants won’t be identified in the research.
One-time participation is an option, but Massart said it is ideal when participants can take part long-term.
As she explained, participation in the study can be thought of in two different ways: the one-time, face-to-face component; and the longitudinal component that includes participants’ electronic health data, and “ongoing but hands-off contribution to research.”
An option for continuing participation is for people to volunteer to upload an app on their phone and receive notifications about new surveys they can fill out.
Additionally, if researchers doing a research study decide they need to collect more information, they could request a subset of participants. For example, if researchers wanted brain MRIs completed for research on Parkinson’s disease, they could look for research IDs of participants on the database, send the IDs to the NIH. The NIH could contact participants to see if they are interested. Participation in extra research would be voluntary.
“Now we have the capacity for people to choose to connect their Fitbits and smartwatches to also transmit additional data over time,” she added.
Massart noted that every participant will get a $25 Visa gift card as an immediate thank you. Additionally, participants may receive valuable medical results that may help with their health care.
Diversity “is really useful when we’re trying to look at precision medicine,” she said.
Precision medicine looks at many factors, such as environment and genetics, to determine who is at risk for diseases such as heart disease or cancer, or what predisposes people to being overweight.
“There are so many different aspects of health that we would like to look at, as well as wellness,” she said. Understanding traits that lead to good health can help researchers answer questions like, “Why do some people live to 102 and do not have dementia, not have heart disease?”
That information may then be applied in medical treatment.
There is no one specific focus for researchers, but emphasis will be on made on items including mental health, cardiovascular disease, weight, understanding nutrition and understanding microbiomes.
“Intuitively, we know that all of these contribute to our health and our wellness,” said Massart.
While scientists have hints about how all these factors are connected, researchers are hopeful this project will provide a better picture of how they add up, and that information could be used to develop better healthcare.
Massart said researcher will try to return to Bradford at a later time to set up the center again, but no plan is currently in place.
People who can’t make it on the April dates can call the above number to express their interest. The more people who express an interest, the more likely another date will be set up. There are many places in the Pittsburgh area where centers will be set up.
“I don’t want anyone to be discouraged if they can’t go those three days,” she said.
Massart said she was one of the first people to join the All of Us Pennsylvania program.
A family medicine physician with a PhD in molecular biology who has been integrating genetics in her work, Massart felt the study was the “natural evolution in my career.”