TY - JOUR
T1 - An Overview of Cancer in the First 315,000 All of Us Participants
AU - the All of Us Research Program Investigators
AU - Aschebrook-Kilfoy, Briseis
AU - Zakin, Paul
AU - Craver, Andrew
AU - Shah, Sameep
AU - Kibriya, Muhammad G.
AU - Stepniak, Elizabeth
AU - Ramirez, Andrea
AU - Clark, Cheryl
AU - Cohn, Elizabeth
AU - Ohno-Machado, Lucila
AU - Cicek, Mine
AU - Boerwinkle, Eric
AU - Schully, Sheri D.
AU - Mockrin, Stephen
AU - Gebo, Kelly
AU - Mayo, Kelsey
AU - Ratsimbazafy, Francis
AU - Sanders, Alan
AU - Shah, Raj C.
AU - Argos, Maria
AU - Ho, Joyce
AU - Kim, Karen
AU - Daviglus, Martha
AU - Greenland, Philip
AU - Ahsan, Habibul
AU - Ahmedani, Brian
AU - Cole Johnson, Christine D.
AU - Antoine-LaVigne, Donna
AU - Singleton, Glendora
AU - Watson-McGee, Pamelia
AU - Norwood, Arnita Ford
AU - Anton-Culver, Hoda
AU - Topol, Eric
AU - Baca-Motes, Katie
AU - Moore-Vogel, Julia
AU - Steinhubl, Steven
AU - Jain, Praduman
AU - Begale, Mark
AU - Jain, Neeta
AU - Klein, David
AU - Sutherland, Scott
AU - Wade, James
AU - Korf, Bruce
AU - Fouad, Mona
AU - Lewis, Beth
AU - Goldstein, David B.
AU - Bier, Louise
AU - Gharavi, Ali G.
AU - Hripcsak, George
AU - Brilliant, Murray H.
N1 - Publisher Copyright:
Copyright: © This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.
PY - 2022/9
Y1 - 2022/9
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85137139058&partnerID=8YFLogxK
U2 - 10.1371/journal.pone.0272522
DO - 10.1371/journal.pone.0272522
M3 - Article
C2 - 36048778
AN - SCOPUS:85137139058
SN - 1932-6203
VL - 17
JO - PLoS ONE
JF - PLoS ONE
IS - 9 September
M1 - e0272522
ER -