PLoS ONE (Jan 2022)

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

  • Briseis Aschebrook-Kilfoy,
  • Paul Zakin,
  • Andrew Craver,
  • Sameep Shah,
  • Muhammad G Kibriya,
  • Elizabeth Stepniak,
  • Andrea Ramirez,
  • Cheryl Clark,
  • Elizabeth Cohn,
  • Lucila Ohno-Machado,
  • Mine Cicek,
  • Eric Boerwinkle,
  • Sheri D Schully,
  • Stephen Mockrin,
  • Kelly Gebo,
  • Kelsey Mayo,
  • Francis Ratsimbazafy,
  • Alan Sanders,
  • Raj C Shah,
  • Maria Argos,
  • Joyce Ho,
  • Karen Kim,
  • Martha Daviglus,
  • Philip Greenland,
  • Habibul Ahsan,
  • All of Us Research Program Investigators

DOI
https://doi.org/10.1371/journal.pone.0272522
Journal volume & issue
Vol. 17, no. 9
p. e0272522

Abstract

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IntroductionThe 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 methodsThis 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 discussionData 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.ConclusionsThis 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.