The National Institutes of Health has set a start date for the full launch of its All of Us precision medicine research project.
NIH announced that nationwide enrollment in All of Us will begin on May 6 with launch events to be hosted in seven cities: New York City, Chicago, Birmingham, Alabama, Detroit, Kansas City, Kansas, Nashville and Pasco, Washington.
All of Us seeks to enroll more than 1 million volunteers over the next 5 to 6 years as one of the "most ambitious" research efforts in the country, said Francis Collins, M.D., director of NIH, at a press briefing Tuesday. "Imagine the research we could enable," he said, with access to "one of the largest and most diverse cohorts" ever made available.
About 25,000 people fully enrolled in the program during its beta phase, which launched last summer.
The program intends to "oversample" in underrepresented communities to build a diverse pool of genomic data for precision medicine.
Eric Dishman, director of the program, said during the briefing that the enrollment process is simple and much can be done in one sitting. Participants agree to release their electronic medical record data to the program, and then take a series of health surveys to fill in additional information.
Participants then visit a clinic for a quick physical to gather height, weight, and blood and urine samples, Dishman said.
Cybersecurity has been a crucial element of discussion in building All of Us, Dishman said. The data is cloud-based, and researchers must come to it to use it, and will not able to copy it to other storage. In addition to controlling access, Dishman said that the program's team has plans in place to address a breach should one occur.
The program is planning to make its first clean data sets available to researchers in 2019, he said, through a researcher portal that is in development.
While facilitating research is one facet of the program, Dishman said, participants will also have access to their own data. Miriam Guzman, who was one of the beta phase participants, said during the briefing that part of what motivated her to volunteer was the ability to access valuable data on her own health and her family's history.
Guzman, a diabetic, said she would seek out information on her condition, and would often run into research with a note that mentioned the sample only reflected people of European ancestry—making the findings far less valuable to her as a Hispanic person.
"How do I know, as a patient, that this information is relevant to me and relevant to my family?" she said.
Dishman said that the future of the program will be in gathering pediatric data. At present, participants must be 18 or over, but All of Us will start to collect data on children as well beginning in summer 2019.