Published September 1, 2022 | Version v1
Journal article Open

An Overview of Cancer in the First 315,000 All of Us Participants

  • 1. University of Chicago
  • 2. Vanderbilt University Medical Center
  • 3. Brigham and Women's Hospital
  • 4. Hunter College City University of New York
  • 5. University of California San Diego Health
  • 6. Mayo Clinic
  • 7. University of Texas Health Center at Houston
  • 8. National Institutes of Health
  • 9. Johns Hopkins University
  • 10. Rush University Medical Center
  • 11. University of Illinois at Chicago
  • 12. Northwestern University

Description

Introduction: The NIH All of Us Research Program will have the scale and scope to enable research for a wide range of diseases, including cancer. The program's focus on diversity and inclusion promises a better understanding of the unequal burden of cancer. Preliminary cancer ascertainment in the All of Us cohort from two data sources (self-reported versus electronic health records (EHR)) is considered.

Materials and methods: This work was performed on data collected from the All of Us Research Program's 315,297 enrolled participants to date using the Researcher Workbench, where approved researchers can access and analyze All of Us data on cancer and other diseases. Cancer case ascertainment was performed using data from EHR and self-reported surveys across key factors. Distribution of cancer types and concordance of data sources by cancer site and demographics is analyzed.

Results and discussion: Data collected from 315,297 participants resulted in 13,298 cancer cases detected in the survey (in 89,261 participants), 23,520 cancer cases detected in the EHR (in 203,813 participants), and 7,123 cancer cases detected across both sources (in 62,497 participants). Key differences in survey completion by race/ethnicity impacted the makeup of cohorts when compared to cancer in the EHR and national NCI SEER data.

Conclusions: This study provides key insight into cancer detection in the All of Us Research Program and points to the existing strengths and limitations of All of Us as a platform for cancer research now and in the future.

Data availability

Data is owned by a third party, the All of Us Research Program. The data underlying this article were provided by the All of Us Research Program by permission that can be sought by scientists and the public alike. The Researcher Workbench is a cloud-based platform where registered researchers can access Registered and Controlled Tier data, including the data presented here. Researchers/citizen scientists must verify their identity and complete the All of Us Research Program data access process to access the Researcher Workbench and Registered Tier data. Once this process is completed, the data will be made available to all persons. More information on data access can be found in the All of Us Research Hub (https://www.researchallofus.org/) as is the option to register for access. The authors did not have any special access privileges to this data that other researchers would not have.

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Additional details

Identifiers

DOI
10.1371/journal.pone.0272522
Other
oai:uchicago.tind.io:6326

Funding

National Institutes of Health
1 OT2 OD026549
National Institutes of Health
1 OT2 OD026554
National Institutes of Health
1 OT2 OD026557
National Institutes of Health
1 OT2 OD026556
National Institutes of Health
1 OT2 OD026550
National Institutes of Health
1 OT2 OD 026552
National Institutes of Health
1 OT2 OD026553
National Institutes of Health
1 OT2 OD026548
National Institutes of Health
1 OT2 OD026551
National Institutes of Health
1 OT2 OD026555
National Institutes of Health
1 OT2 OD026552
National Institutes of Health
AOD 16037
National Institutes of Health
HHSN 263201600085U
National Institutes of Health
5 U2C OD023196
National Institutes of Health
1 U24 OD023121
National Institutes of Health
U24 OD023176
National Institutes of Health
1 U24 OD023163
National Institutes of Health
3 OT2 OD023205
National Institutes of Health
3 OT2 OD023206
National Institutes of Health
1 OT2 OD025277
National Institutes of Health
3 OT2 OD025315
National Institutes of Health
1 OT2 OD025337
National Institutes of Health
1 OT2 OD025276
National Institutes of Health
1 OT2 OD023132

UChicago Information

Division(s)
Biological Sciences Division
Department(s)
Medicine, Public Health Sciences
Center(s) or Institute(s)
Comprehensive Cancer Center, Institute for Population and Precision Health