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

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. Current eligibilit...

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Bibliographic Details
Published in:	British journal of radiology 2020-03, Vol.93 (1107), p.20190673-20190673
Main Authors:	Lawell, Miranda P, Indelicato, Daniel J, Paulino, Arnold C, Hartsell, William, Laack, Nadia N, Ermoian, Ralph P, Perentesis, John P, Vatner, Ralph, Perkins, Stephanie, Mangona, Victor S, Hill-Kayser, Christine E, Wolden, Suzanne L, Kwok, Young, Chang, John Han-Chih, Wilkinson, J Ben, MacEwan, Iain, Chang, Andrew L, Eaton, Bree R, Ladra, Matthew M, Gallotto, Sara L, Weyman, Elizabeth A, Bajaj, Benjamin V M, Baliga, Sujith, Yeap, Beow Y, Berrington de Gonzalez, Amy, Yock, Torunn I
Format:	Article
Language:	eng
Subjects:	Adolescent Astrocytoma - radiotherapy Central Nervous System Neoplasms - radiotherapy Cerebellar Neoplasms - radiotherapy Child Child, Preschool Cloud Computing Data Collection - standards Ependymoma - radiotherapy Female Glioma - radiotherapy Humans Infant International Cooperation Male Medulloblastoma - radiotherapy Neoplasms - radiotherapy Patient Reported Outcome Measures Photons - therapeutic use Proton Therapy - statistics & numerical data Proton therapy special feature: Full paper Quality of Life Registries - statistics & numerical data Self Report Young Adult
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Summary:	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. 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. 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 ( = 349), ependymoma ( = 309), and glial/astrocytoma tumors ( = 279). The most common non-CNS diagnoses are rhabdomyosarcoma ( = 284), Ewing's sarcoma ( = 153), and neuroblastoma ( = 130). While the majority of participants are US residents, 18.7% come from 36 other countries. Over 685 patients participate in the PedsQL study. 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. 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.
ISSN:	0007-1285 1748-880X