Table 1.
Data Source | Details |
---|---|
Current sources | |
Health surveys | Initial surveys include information on sociodemographic characteristics, overall health, lifestyle, and substance use, with subsequent modules covering personal and family medical history and access to health care. |
Physical measurements | Per-protocol measurements include blood pressure, heart rate, weight, height, body-mass index, and hip and waist circumferences. |
Biospecimens† | Blood and urine samples are tested for DNA, RNA, cell-free DNA, serum, and plasma. If blood specimens cannot be obtained, saliva specimens are obtained. |
Electronic health records | Initial capture of structured data includes billing codes, medication history, laboratory results, vital signs, and encounter records from health care provider organizations. Records will be expanded to include narrative documents. Pilot studies are testing data collection through Sync for Science and other health data aggregators. |
Digital health information | Data can be captured from compatible participant-owned devices such as Fitbit. Pilot studies of other devices and linkage to health apps are being explored. |
Future sources | |
Health surveys | Additional modules, including surveys regarding social behavioral determinants of health, are under development. |
Bioassays | Pilot studies for genotyping and whole-genome sequencing are expected to begin by early 2020. Additional pilot studies of bioassays are planned. |
Health care claims data | Systems for the use of claims data, including billing codes and medication data, are under development. |
Geospatial and environmental data | These data include geospatial linkage to measures such as weather, air quality, pollutant levels, and census data. Assays and sensor-based measurements of exposure are under consideration. |
Other sources | Voluntary contributions of data from social networks (e.g., Twitter feeds) and additional biospecimen collections are under consideration. |
Additional information is available at https://www.researchallofus.org/data.
Types of biospecimens are listed in Table S3 in the Supplementary Appendix.