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

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 Al...

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Autores principales: Aschebrook-Kilfoy, Briseis, Zakin, Paul, Craver, Andrew, Shah, Sameep, Kibriya, Muhammad G., Stepniak, Elizabeth, Ramirez, Andrea, Clark, Cheryl, Cohn, Elizabeth, Ohno-Machado, Lucila, Cicek, Mine, Boerwinkle, Eric, Schully, Sheri D., Mockrin, Stephen, Gebo, Kelly, Mayo, Kelsey, Ratsimbazafy, Francis, Sanders, Alan, Shah, Raj C., Argos, Maria, Ho, Joyce, Kim, Karen, Daviglus, Martha, Greenland, Philip, Ahsan, Habibul
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9436122/
https://www.ncbi.nlm.nih.gov/pubmed/36048778
http://dx.doi.org/10.1371/journal.pone.0272522
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author Aschebrook-Kilfoy, Briseis
Zakin, Paul
Craver, Andrew
Shah, Sameep
Kibriya, Muhammad G.
Stepniak, Elizabeth
Ramirez, Andrea
Clark, Cheryl
Cohn, Elizabeth
Ohno-Machado, Lucila
Cicek, Mine
Boerwinkle, Eric
Schully, Sheri D.
Mockrin, Stephen
Gebo, Kelly
Mayo, Kelsey
Ratsimbazafy, Francis
Sanders, Alan
Shah, Raj C.
Argos, Maria
Ho, Joyce
Kim, Karen
Daviglus, Martha
Greenland, Philip
Ahsan, Habibul
author_facet Aschebrook-Kilfoy, Briseis
Zakin, Paul
Craver, Andrew
Shah, Sameep
Kibriya, Muhammad G.
Stepniak, Elizabeth
Ramirez, Andrea
Clark, Cheryl
Cohn, Elizabeth
Ohno-Machado, Lucila
Cicek, Mine
Boerwinkle, Eric
Schully, Sheri D.
Mockrin, Stephen
Gebo, Kelly
Mayo, Kelsey
Ratsimbazafy, Francis
Sanders, Alan
Shah, Raj C.
Argos, Maria
Ho, Joyce
Kim, Karen
Daviglus, Martha
Greenland, Philip
Ahsan, Habibul
author_sort Aschebrook-Kilfoy, Briseis
collection PubMed
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.
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spelling pubmed-94361222022-09-02 An Overview of Cancer in the First 315,000 All of Us Participants Aschebrook-Kilfoy, Briseis Zakin, Paul Craver, Andrew Shah, Sameep Kibriya, Muhammad G. Stepniak, Elizabeth Ramirez, Andrea Clark, Cheryl Cohn, Elizabeth Ohno-Machado, Lucila Cicek, Mine Boerwinkle, Eric Schully, Sheri D. Mockrin, Stephen Gebo, Kelly Mayo, Kelsey Ratsimbazafy, Francis Sanders, Alan Shah, Raj C. Argos, Maria Ho, Joyce Kim, Karen Daviglus, Martha Greenland, Philip Ahsan, Habibul PLoS One Research Article 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. Public Library of Science 2022-09-01 /pmc/articles/PMC9436122/ /pubmed/36048778 http://dx.doi.org/10.1371/journal.pone.0272522 Text en https://creativecommons.org/publicdomain/zero/1.0/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 (https://creativecommons.org/publicdomain/zero/1.0/) public domain dedication.
spellingShingle Research Article
Aschebrook-Kilfoy, Briseis
Zakin, Paul
Craver, Andrew
Shah, Sameep
Kibriya, Muhammad G.
Stepniak, Elizabeth
Ramirez, Andrea
Clark, Cheryl
Cohn, Elizabeth
Ohno-Machado, Lucila
Cicek, Mine
Boerwinkle, Eric
Schully, Sheri D.
Mockrin, Stephen
Gebo, Kelly
Mayo, Kelsey
Ratsimbazafy, Francis
Sanders, Alan
Shah, Raj C.
Argos, Maria
Ho, Joyce
Kim, Karen
Daviglus, Martha
Greenland, Philip
Ahsan, Habibul
An Overview of Cancer in the First 315,000 All of Us Participants
title An Overview of Cancer in the First 315,000 All of Us Participants
title_full An Overview of Cancer in the First 315,000 All of Us Participants
title_fullStr An Overview of Cancer in the First 315,000 All of Us Participants
title_full_unstemmed An Overview of Cancer in the First 315,000 All of Us Participants
title_short An Overview of Cancer in the First 315,000 All of Us Participants
title_sort overview of cancer in the first 315,000 all of us participants
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9436122/
https://www.ncbi.nlm.nih.gov/pubmed/36048778
http://dx.doi.org/10.1371/journal.pone.0272522
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