Precision Medicine Initiative to Focus on Minority Groups

— Most data will be from people historically underrepresented in biomedical research

MedpageToday

More than 175,000 Americans have enrolled in the All of Us Research Program, which is set to have at least 1 million people enrolled over several decades.

Collecting data -- such as biospecimens, health questionnaires, and electronic health records -- from 1 million people will create a sample size capable of generating studies that account for individual differences in lifestyle, socioeconomic factors, environment, and biologic characteristics. The data repository has the potential to boost precision diagnosis, prevention, and treatment.

"Advances in genomics and biosensors have set the stage for refined taxonomies of disease, which may help to guide prognosis, improve existing treatments, and aid in the development of new therapies. Most important, advances in genomic analyses have helped to identify the underlying causes of disease in individual patients. However, many efforts have been hampered by an inadequate sample size and a lack of diversity among participants," researchers wrote in the New England Journal of Medicine.

The All of Us program received funding from the National Institutes of Health in 2016 and began enrolling participants in 2018. As of July 2019, biospecimens had been collected from 175,000 people.

The research program is designed to collect data from underrepresented groups. So far, more than 80% of participants are from groups that have been underrepresented in biomedical research.

Participation in the All of Us program is guided by several features:

  • After granting consent, program participants complete baseline health and demographic surveys
  • Program participants grant access and sharing rights to electronic health record (EHR) data
  • Program participants provide biospecimens and physical measurements
  • Program participants can provide Fitbit data to the All of Us program, which plans to include data from other monitoring devices
  • Other data collected from program participants includes billing codes, laboratory and medication data, and narrative content

"With a plan to follow the health and outcomes of participants over decades, the All of Us program should enable research that provides an improved understanding of health and disease, which in turn would support accurate diagnoses, rational disease-prevention strategies, treatment selection, and the development of targeted therapies," the researchers wrote.

The data are expected to generate groundbreaking opportunities. "Our hope is that identification of risk factors and biomarkers -- including environmental exposures, habits, and social determinants -- will improve population health by bringing about more efficient and accurate diagnosis and screening, better understanding of diverse populations, more rational use of existing therapeutics, and the development of new treatments," the authors wrote.

This report is brought to you by HealthLeaders Media.

Primary Source

New England Journal of Medicine

Source Reference: Denny JC, et al "The "All of Us" Research Program" New Eng J Med 2019; DOI: 10.1056/NEJMsr1809937.