Table 2.
Overview of major data types currently stored in the RDR
| Data Category | Data Type | Data Source / Sharing Partner(s) | Number of Records in the RDR as of Sept 2022a |
|---|---|---|---|
| Research + Operational | Consent (Including general consent, EHR consent, and genomic return of results consent) |
Participant portalsb | 1,355,059 |
| Research + Operational | Questionnaires (18 distinct questionnaires across both portals to date) |
Participant portalsb | 2,487,109 |
| Research + Operational | Baseline physical measurements (In clinic and self-reported) |
HealthPro (in clinic) Participant portalsb (self-report) |
368,090 |
| Operational | Biospecimen orders (Blood, urine, and saliva orders) |
Biobank, Genome Centers, Clinical Validation Labs, Genetic Counseling Resources, and the DRC Genomics Curation System | 726,279 |
| Research + Operational | EHR | HPOs, Participant portalsb | 3,525,720 |
| Research + Operational | Digital Health Technology (Including Fitbit and Apple HealthKit data) |
Participant portalsb | 28,864 |
| Research + Operational | Genomic data (Array and whole genome sequencing data) |
Genome Centers, Genetic Counseling resources | 848,662 |
a
Record count as of September 2022 exceeds the number of enrolled participants, as participants may have multiple records, and some records are intentionally duplicated as part of operational and quality control processes. Copies are retained per the RDR’s append-only policy. Only the subset of research-grade data on currently consented participants is curated and made available for research.
b
All of Us participant portals are developed and managed by the Participant Technologies Systems Center and The Participant Center.