CCOI

CENTER FOR CLINICAL OBSERVATIONAL INVESTIGATIONS

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All of Us

Organization: National Institutes of Health

Image provided courtesy of the All of Us Research Program: National Institutes of Health

Description

The National Institutes of Health’s All of Us Research Program is a large-scale United States based research program that began nationwide enrollment in May 2018 and intends to recruit more than one million participants. The program integrates Electronic Health Records (EHR) with survey questionnaire to develop a diverse, information rich database that serves as a central point for many secondary research studies and reduce the need for developing individual single use study specific data collection protocols. The program includes two tiers of data access the Registered tier and the more restricted Controlled tier.

Key Information

Dataset Contents
Profile Date April 2023
Data Date Span 1981-Jan-05 to 2022-July-01
Patient Count 413,457
Deceased Count 3,256
Recruitment Status Active
Dataset Type Electronic Health Records, Surveys and Questionnaires, Research visit, Wearable Fitness Device, Genomic
Context Inpatient, Outpatient, Pharmacy, Lab, Emergency Room
Region United States
Recruitment Age 18 years old and Above
Access & Availability
Native Data Structure OMOP
Hosting Remote Google cloud environment through workbench.researchallofus.org
Database File Size Not Applicable
Availability Restrictions Only available to Academic institutions, US Government, Healthcare Institutions and Not-For-Profit Organizations
Data Identifiability
Controlled Tier HIPAA: Identifiable, Common Rule: De-identified
Registered Tier HIPAA: De-Identifiable, Common Rule: De-identified

References and Resources:

Dataset Specific Tools

R4aou: R package of useful functions for tasks inside the All of Us Workbench

Relevant Publications

  • All of Us Research Program Investigators; Denny JC, Rutter JL, Goldstein DB, Philippakis A, Smoller JW, Jenkins G, Dishman E. The "All of Us" Research Program. N Engl J Med. 2019 Aug 15;381(7):668-676. doi: 10.1056/NEJMsr1809937. PMID: 31412182; PMCID: PMC8291101.
  • Mayer CS, Huser V. Learning important common data elements from shared study data: The All of Us program analysis. PLoS One. 2023 Jul 7;18(7):e0283601. doi: 10.1371/journal.pone.0283601. PMID: 37418391; PMCID: PMC10328251.

Acknowledgement

The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.