An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology

Miranda P. Lawell, Daniel J. Indelicato, Arnold C. Paulino, William Hartsell, Nadia N. Laack, Ralph P. Ermoian, John P. Perentesis, Ralph Vatner, Stephanie Perkins, Victor S. Mangona, Christine E. Hill-Kayser, Suzanne L. Wolden, Young Kwok, John Han Chih Chang, J. Ben Wilkinson, Iain MacEwan, Andrew L. Chang, Bree R. Eaton, Matthew M. Ladra, Sara L. GallottoElizabeth A. Weyman, Benjamin V.M. Bajaj, Sujith Baliga, Beow Y. Yeap, Amy Berrington de Gonzalez, Torunn I. Yock

Research output: Contribution to journalArticle

1 Scopus citations

Abstract

OBJECTIVE: The Pediatric Proton/Photon Consortium Registry (PPCR) is a comprehensive data registry composed of pediatric patients treated with radiation. It was established to expedite outcomes-based research. The attributes which allow the PPCR to be a successful collaboration are reviewed. METHODS AND MATERIALS: Current eligibility criteria are radiotherapy patients < 22 years treated at one of the 15 US participating institutions. Detailed health and treatment data are collected about the disease presentation and treatment exposures, and annually thereafter, in REDCap (Research Electronic Data Capture). DICOM (Digital Imaging and Communications in Medicine) imaging and radiation plans are collected through MIM/MIMcloud. An optional patient-reported quality-of-life (PedsQL) study is administered at 10 sites. RESULTS: Accrual started October 2012 with 2,775 participants enrolled as of 25 July 2019. Most patients, 62.0%, were treated for central nervous system (CNS) tumors, the most common of which are medulloblastoma (n = 349), ependymoma (n = 309), and glial/astrocytoma tumors (n = 279). The most common non-CNS diagnoses are rhabdomyosarcoma (n = 284), Ewing's sarcoma (n = 153), and neuroblastoma (n = 130). While the majority of participants are US residents, 18.7% come from 36 other countries. Over 685 patients participate in the PedsQL study. CONCLUSIONS: The PPCR is a valuable research platform capable of answering countless research questions that will ultimately improve patient care. Centers outside of the USA are invited to participate directly or may engage with the PPCR to align data collection strategies to facilitate large-scale international research. ADVANCES IN KNOWLEDGE: For investigators looking to carry out research in a large pediatric oncology cohort or interested in registry work, this paper provides an updated overview of the PPCR.

Original languageEnglish (US)
Number of pages1
JournalThe British journal of radiology
Volume93
Issue number1107
DOIs
StatePublished - Mar 1 2020

ASJC Scopus subject areas

  • Radiology Nuclear Medicine and imaging

Fingerprint Dive into the research topics of 'An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology'. Together they form a unique fingerprint.

  • Cite this

    Lawell, M. P., Indelicato, D. J., Paulino, A. C., Hartsell, W., Laack, N. N., Ermoian, R. P., Perentesis, J. P., Vatner, R., Perkins, S., Mangona, V. S., Hill-Kayser, C. E., Wolden, S. L., Kwok, Y., Chang, J. H. C., Wilkinson, J. B., MacEwan, I., Chang, A. L., Eaton, B. R., Ladra, M. M., ... Yock, T. I. (2020). An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology. The British journal of radiology, 93(1107). https://doi.org/10.1259/bjr.20190673