Pitt partners with National Institutes of Health for nationwide medical study
Big data program seeks information on 1 million people
The All of Us Research Program, potentially the largestever nationwide health study, will start signing up volunteer participants online Sunday. In Western Pennsylvania, the University of Pittsburgh is one of more than 100 partners in the collaboration funded by the National Institutes of Health.
The goal is collecting health information from 1 million or more people as well as details about their lifestyles, environment and biological makeup, including genes. The wide net aims to draw groups of people not usually
involved in traditional research.
“It’s all about big data,” Steven R. Reis, founding director of the Clinical and Translational Science Institute at the University of Pittsburgh, said Wednesday as he announced the university’s readiness to help launch the national study. CTSI is directing the All of Us Pennsylvania research study, the local arm in Western Pennsylvania.
“The goal is to have 51 percent of participants who are underrepresented in biomedical research,” he said.
It has been two years since President Barack Obama announced a Precision Medicine Initiative to move forward with individualized disease treatment and prevention. An early partner that has already enrolled more than 5,000 people, Pitt expects to receive more than $60 million over six years to fund the work, Dr. Reis said. More than 25,000 people in the U.S. have signed up. “The study is critically important to the health of Pennsylvanians,” he said.
Among the expectations are a greater understanding of the effects of both common treatments and those needed for rare diseases. For example, Dr. Reis said, all patients with high blood pressure get the same treatment, because detailed data is not available to suggest personalized care.
People at least 18 years old may sign up at joinallofus.org. Dr. Reis said participants start with filling out online surveys and updating their history periodically. They donate their electronic health records and at clinic locations in the region they make at least one visit to give a blood and urine sample. They’ll get their results, along with a full genome sequencing at some point, he said.
Stored in a central location at Vanderbilt University in Nashville, Tenn., the data will be available to researchers and participants. In the future, people may be asked to share data on wearable devices or join other research studies.
Pitt biomedical informatics expert and All of Us investigator Shyam Visweswaran said the privacy of the study participants is protected at three levels of access, from general numbers that will be widely available, to data made anonymous and used by researchers, and then to data available to researchers who are cleared to contact participants only for research.
Ericcka Hager, 29, of Plum joined All of Us as a participant through Pitt in October. She said Wednesday that convincing her grandmother that the large health study was a good idea was a challenge. Ms. Hager is a health advocate for the Urban League of Greater Pittsburgh and she’s familiar with the distrust of medical research in the African-American community.
“I knew convincing my grandmother was my first job,” she said. She said adding to the diversity of the study participants might bring answers about her own family’s recent experiences with breast cancer and ALS.
Joyce Yasko, 77, of Evans City said she’s participating in All of Us to invest in the future of health care, for family and friends and cancer patients like those she encountered in her career as a cancer care administrator.
“In the future, [treatment] will be personalized to them and their tumor,” she said. Participating in the study is easy and worthwhile, she added: “I can’t think of a better thing to do for the future.”
A co-investigator in the All of Us Pennsylvania program, Mylynda Massart said Wednesday she’s eager to discover individualized treatments for the patients she sees as a UPMC family medicine physician.
“I want to use the best-evidence medicine in my patients,” she said. “Often the evidence doesn’t apply to the patient in front of me.” With a larger total pool of participants, she explained, any individual research will have greater numbers of appropriate groups to compare with each other.