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Making progress against rare cancers: A case study on neuroendocrine tumors
Journal article   Open access   Peer reviewed

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

Michael O’Rorke, Elizabeth Chrischilles and NET‐PRO Study Investigators
Cancer, Vol.130(9), pp.1568-1574
04/11/2024
DOI: 10.1002/cncr.35184
PMCID: PMC11177581
PMID: 38244195
Appears in  UI Libraries Support Open Access
url
https://doi.org/10.1002/cncr.35184View
Published (Version of record) Open Access

Abstract

Abstract 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.
 Epidemiology carcinoid tumor humans neoplasms neuroendocrine tumors patient-reported outcome measures rare diseases UIOWA OA Agreement

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