An Overview of Cancer in the First 315,000 All of Us Participants
Creators
-
Aschebrook-Kilfoy, Briseis1
- Zakin, Paul1
- Craver, Andrew1
- Shah, Sameep1
- Kibriya, Muhammad G.1
- Stepniak, Elizabeth1
- Ramirez, Andrea2
- Clark, Cheryl3
- Cohn, Elizabeth4
- Ohno-Machado, Lucila5
- Cicek, Mine6
- Boerwinkle, Eric7
- Schully, Sheri D.8
- Mockrin, Stephen8
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Gebo, Kelly9
- Mayo, Kelsey8
- Ratsimbazafy, Francis8
-
Sanders, Alan10
- Argos, Maria11
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Ho, Joyce12
- Kim, Karen1
- Daviglus, Martha11
- Greenland, Philip12
- Ahsan, Habibul1
- 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.
Files
journal.pone.0272522.pdf
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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