Making progress against rare cancers: A case study on neuroendocrine tumors

Making progress against rare cancers: A case study on neuroendocrine tumors

In April 2023, the National Cancer Institute offered a roadmap for cancer research to achieve Cancer Moonshot goals. To reach these goals requires making progress for all cancers, not just those that are most common. Achieving progress against rare cancers, as well as common cancers, requires involv...

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Published in:Cancer Vol. 130; no. 9; pp. 1568 - 1574
Main Authors: O’Rorke, Michael, Chrischilles, Elizabeth, Chamberlain, Alanna M., Chrischilles, Elizabeth A., Cowell, Lindsay G., Dillon, Joseph S., Early, Carol, Else, Tobias, Gamblin, T. Clark, Geller, David, Gellerman, Elyse, Gryzlak, Brian, Halfdanarson, Thorvardur R., Hamilton, Harley C., He, Fiona C., Hourcade, Juan Pablo, Indrees, Kamran, Kazmi, Syed M., Lancaster, William, Lewis‐Hughes, Amoni, Liu, Mei, Mailman, Josh A., McDowell, Bradley, Ramirez, Robert A., Ramnaraign, Brian H., Sanoff, Hanna K., Soares, Heloisa P., Sukrithan, Vineeth, Taylor, Bradley W., Tepper, Mia S., Wahmann, Maryann, Zamba, Gideon K. D.
Format: Journal Article
Language:English
Published: United States Wiley Subscription Services, Inc 01-05-2024
Subjects:
Cancer
carcinoid tumor
epidemiology
Humans
Neoplasms
Neuroendocrine tumors
Neuroendocrine Tumors - diagnosis
Neuroendocrine Tumors - therapy
Patient Outcome Assessment
Patient Reported Outcome Measures
Patient-Centered Care
Patients
rare diseases
Research Personnel
Tumors
rare diseases
epidemiology
carcinoid tumor
neoplasms
humans
neuroendocrine tumors
patient‐reported outcome measures
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Summary:In April 2023, the National Cancer Institute offered a roadmap for cancer research to achieve Cancer Moonshot goals. To reach these goals requires making progress for all cancers, not just those that are most common. Achieving progress against rare cancers, as well as common cancers, requires involvement of large clinical research networks. In 2020, the Patient‐Centered Outcomes Research Institute (PCORI) launched an initiative on Conducting Rare Disease Research using PCORnet, the National Patient‐Centered Clinical Research Network. The purpose of this commentary is to introduce the broader community of cancer researchers to the PCORnet NET‐PRO study (comparing the effects of different treatment approaches for neuroendocrine tumors on patient‐reported outcomes) thereby demonstrating how researchers can use the PCORnet infrastructure to conduct large‐scale patient‐centered studies of rare cancers. Achieving progress against rare cancers requires involvement of large clinical research networks. This commentary showcases the NET‐PRO study (comparing the effects of different treatment approaches for neuroendocrine tumors on patient‐reported outcomes) to demonstrate how cancer researchers can conduct large‐scale patient‐centered studies of rare cancers using PCORnet.
Bibliography:The members of the NET‐PRO Study Investigators include the following: Alanna M. Chamberlain, PhD (Department of Quantitative Health Sciences, Mayo Clinic, Rochester, Minnesota); Elizabeth A. Chrischilles, PhD (Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa); Lindsay G. Cowell, MS, PhD (O’Donnell School of Public Health, UT Southwestern Medical Center, Dallas, Texas); Joseph S. Dillon, MB, BCh, BAO (The University of Iowa, Iowa City, Iowa); Carol Early, BA (University of Kansas Medical Center, Kansas City, Kansas); Tobias Else, MD (Department of Internal Medicine, Division of Metabolism, Endocrinology and Diabetes, University of Michigan, Ann Arbor, Michigan); T. Clark Gamblin, MD, MS, MBA (Medical College of Wisconsin, Milwaukee, Wisconsin); David Geller, MD (University of Pittsburgh, Pittsburgh, Pennsylvania); Elyse Gellerman, MHS (Neuroendocrine Tumor Research Foundation, Boston, Massachusetts); Brian Gryzlak, MSW, MA (Department of Epidemiology, College of Public Health, University of Iowa); Thorvardur R. Halfdanarson, MD (Mayo Clinic, Rochester, Minnesota); Harley C. Hamilton, BS (Ohio State University Wexner Medical Center, Comprehensive Cancer Center, Columbus, Ohio); Fiona C. He, MD (Allina Health Cancer Institute, Minneapolis, Minnesota); Juan Pablo Hourcade, PhD (Department of Computer Science, College of Liberal Arts and Sciences, University of Iowa, Iowa City, Iowa); Kamran Indrees, MD, MSCI, MMHC (Vanderbilt University Medical Center, Nashville, Tennessee); Syed M. Kazmi, MD (University of Texas Southwestern Medical Center, Dallas, Texas); William Lancaster, MD (Department of Surgery, Medical University of South Carolina, Charleston, South Carolina); Amoni Lewis‐Hughes, BS (Ohio State University Wexner Medical Center, Comprehensive Cancer Center, Columbus, Ohio); Mei Liu, PhD (Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, Florida); Josh A. Mailman, MBA (NorCal CarciNET Community, Ripon, California); Bradley McDowell, PhD (Holden Comprehensive Cancer Center, University of Iowa, Iowa City, Iowa); Michael O’Rorke, PhD (Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa); Robert A. Ramirez, DO (Vanderbilt University Medical Center, Nashville, Tennessee); Brian H. Ramnaraign, MD (University of Florida, Gainesville, Florida); Hanna K. Sanoff, MD (Division of Oncology, Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina); Heloisa P. Soares, MD, PhD (Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah); Vineeth Sukrithan, MD (Ohio State University, Columbus, Ohio); Bradley W. Taylor, MBA (Medical College of Wisconsin, Milwaukee, Wisconsin); Mia S. Tepper, MBA (The Healing NET Foundation, Los Angeles, California); Maryann Wahmann (Neuroendocrine Cancer Awareness Network, Fort Mill, South Carolina); Gideon K. D. Zamba, PhD (Department of Biostatistics, College of Public Health, University of Iowa, Iowa City, Iowa).
ObjectType-Article-1
SourceType-Scholarly Journals-1
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content type line 23
ISSN:0008-543X
1097-0142
1097-0142
DOI:10.1002/cncr.35184