Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data

Michael A. O’Rorke; Bradley D. McDowell; Tao Xu; Rhonda R. DeCook; Brian M. Gryzlak; Nicholas J. Rudzianski; Kimberly C. Serrano; Abigayle M. Wehrheim; Udhayvir S. Grewal; Chandrikha Chandrasekharan; Joseph S. Dillon; Thorvardur R. Halfdanarson; Michael J. Schnell; Carrie L. Witter; T. Clark Gamblin; Syed Kazmi; Lindsay G. Cowell; Tobias Else; Heloisa P. Soares; Vineeth Sukrithan; Sravani Chandaka; Hanna K. Sanoff; Fiona C. He; David A. Geller; Robert A. Ramirez; Mei Liu; William Lancaster; Josh A. Mailman; Heather Moran; Maryann Wahmann; Elyse Gellerman; Elizabeth A. Chrischilles

doi:10.1007/s12020-026-04611-w

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Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data

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Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data

Michael A. O’Rorke, Bradley D. McDowell, Tao Xu, Rhonda R. DeCook, Brian M. Gryzlak, Nicholas J. Rudzianski, Kimberly C. Serrano, Abigayle M. Wehrheim, Udhayvir S. Grewal, Chandrikha Chandrasekharan, …

Endocrine, Vol.91(1), 141

04/27/2026

DOI: 10.1007/s12020-026-04611-w

PMID: 42043735

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Abstract

Purpose We compared demographic and clinical characteristics of patients with gastroenteropancreatic (GEP) and lung neuroendocrine tumors (NETs) enrolled in the NET-PRO study to those in the U.S. Surveillance Epidemiology and End Results (SEER) program to evaluate the comparability of NET-PRO as a resource for real-world evidence generation and patient reported outcomes (PROs). Methods NET-PRO enrolled adults with GEP or lung NETs from 14 health systems between 2018 and 2024. SEER data included patients diagnosed with NETs from 2018 to 2021 across 22 U.S. cancer registries. We compared age, sex, race/ethnicity, tumor site, stage, and surgery between cohorts using standardized mean differences (SMDs), with values ≥ 0.2 interpreted as meaningful. Results We analyzed 1,974 GEP-NET and 394 lung NET patients in NET-PRO versus 38,942 and 11,265, respectively, in SEER. Most demographic and clinical characteristics were broadly similar between cohorts, with trivial differences by sex (SMDs 0.16–0.22) and moderate differences in mean age (SMD = 0.47 for lung NETs). Race/ethnicity differences were larger, with Non-Hispanic White patients overrepresented in NET-PRO (SMDs 0.53–0.84). Tumor site and stage distributions differed modestly. Surgery rates were comparable for GEP-NETs but higher among NET-PRO lung NET patients (SMD = 0.47). Conclusion NET-PRO demonstrates broadly comparable demographic characteristics to SEER across factors such as age and sex. While race/ethnicity differences highlight areas for improved inclusion, other areas of variation suggest important future research covariates. These findings support the contextual comparability of NET-PRO with the broader NET population and its value as a resource for real-world evidence generation.

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Title: Subtitle: Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data
Creators: Michael A. O’Rorke - 145 N Riverside Drive, Iowa City, IA 52242 USA Iowa City, IA USA
Bradley D. McDowell - University of Iowa
Tao Xu - University of Iowa
Rhonda R. DeCook - University of Iowa
Brian M. Gryzlak - University of Iowa
Nicholas J. Rudzianski - 145 N Riverside Drive, Iowa City, IA 52242 USA
Kimberly C. Serrano - University of Iowa
Abigayle M. Wehrheim - University of Iowa
Udhayvir S. Grewal - University of Iowa
Chandrikha Chandrasekharan - The University of Texas MD Anderson Cancer Center
Joseph S. Dillon - University of Iowa
Thorvardur R. Halfdanarson - Mayo Clinic in Arizona
Michael J. Schnell - Mayo Clinic in Arizona
Carrie L. Witter - Mayo Clinic in Arizona
T. Clark Gamblin - Medical College of Wisconsin
Syed Kazmi - The University of Texas Southwestern Medical Center
Lindsay G. Cowell - Dallas, TX USA
Tobias Else - University of Michigan
Heloisa P. Soares - Salt Lake City, UT USA
Vineeth Sukrithan - The Ohio State University
Sravani Chandaka - University of Kansas Medical Center
Hanna K. Sanoff - University of North Carolina at Chapel Hill
Fiona C. He - Allina Health
David A. Geller - University of Pittsburgh
Robert A. Ramirez - Vanderbilt University Medical Center
Mei Liu - University of Florida
William Lancaster - Medical University of South Carolina
Josh A. Mailman - NorCal CarciNET Community, Oakland, CA USA
Heather Moran - Healing Foundation
Maryann Wahmann - Pancreatic Cancer Action Network
Elyse Gellerman - Neuroendocrine Tumor Research Foundation
Elizabeth A. Chrischilles - University of Iowa
Resource Type: Journal article
Publication Details: Endocrine, Vol.91(1), 141
DOI: 10.1007/s12020-026-04611-w
PMID: 42043735
ISSN: 1355-008X
eISSN: 1559-0100
Publisher: Springer Nature
Grant note: Patient-Centered Outcomes Research Institute: RD-2020C2-20329
Research reported in this paper is funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (RD-2020C2-20329), the National Center for Advancing Translational Sciences of the National Institutes of Health (UM1TR004403), and shared resources administered under a Cancer Center support Grant (P30 CA086862). The content is solely the responsibility of the authors and does not necessarily represent the official views of PCORI or the National Institutes of Health.
Language: English
Date published: 04/27/2026
Academic Unit: Pharmacy; Epidemiology; Pathology; Fraternal Order of Eagles Diabetes Research Center; Endocrinology and Metabolism; Holden Comprehensive Cancer Center; Internal Medicine
Record Identifier: 9985157610502771

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