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

• 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
• ISSN: 0008-543X; 1097-0142; 1097-0142
• DOI: 10.1002/cncr.35184

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.