Community Health Center Was Chosen to Participate in a Major Genetic and Lifestyle Study
CHC part of Precision Medicine Cohort
Other Participants Include National Institutes of Health, Columbia University, Northwestern University; the University of Arizona; and the University of Pittsburgh
Care to be part of “precision medicine cohort“? It sounds like an undercover super-secret operation, but really, it’s scientists searching for a million volunteers willing to take part in a 10-year research project looking into causes and cures of disease.
Mark Masselli thinks it’s a good idea: “There are a lot of enticing reasons to participate.” Volunteers will share how old they are, their race, their income, education, sexual orientation and gender as well as give an in depth review of their medical history, blood and DNA. The Community Health Center is one of half-dozen clinics chosen by the National Institutes of Health; other hospitals and community health centers will invite patients to participate.
The project began as part of President Obama’s Precision Medicine Initiative where medical treatment is individually tailored to the individual patients. Joining is easy: participants can sign up by computer, smartphone, or land-line telephone. The project is being orchestrated by Dr. Francis S. Collins, director of the National Institutes of Health, who previously led the government’s successful effort to map the human genome.
Data collection comes from a variety of sources. They include online forms, in-person exams, existing health records, Fitbit, smartphone apps and wearable sensors, making it easy to record blood pressure, heart rate and other vital signs.
The scale of the project “precision medicine cohort” dwarfs nearly almost all other health research studies in the U.S. By comparison, the Framingham Heart Study, which produced valuable insights on heart disease, followed only about 15,500 people.
NIH researchers want partners, not just patients, viewing them not just as “human subjects.” Later, patients can access to all the information about themselves, such as lab and genetic test results. Doctors could then use the information to customize treatment at a granular level for patient. Unusually, volunteers can help guide the research by sitting on steering committee and advisory boards.
Congress in December 2016 provided funding to the NIH for the million-person study and bipartisan support suggests the project will continue.
Other medical partners include the Mayo Clinic has created a huge databank to collect, analyze and store 35 million samples of blood, and DNA. Vanderbilt University in Nashville, Tennessee, operates a data center storing information. Some data will be made available, without personal identifiers, to researchers and “citizen scientists.”
Diversity is key: participants will be recruited to reflect geographic, racial, ethnic and socioeconomic variations of the country. Community health centers, such as CHC where Mark Masselli is President and Co-founder, are targeted because almost all patients earn much less than the poverty level, and about one-third of health center volunteers are Latinos and approximately 25% are African-American.
Where to sign up? Academic medical centers at Columbia University, collaborating with NewYork-Presbyterian Hospital, Harlem Hospital and Weill Cornell Medicine; Northwestern University in Illinois; the University of Arizona; and the University of Pittsburgh, each of which is working with local partners.
But there is much more to it than statistics and lab work. “Perched on your shoulders will be the best and brightest researchers, working on your behalf,” says Mark Masslli.