{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,21]],"date-time":"2026-01-21T14:49:02Z","timestamp":1769006942656,"version":"3.49.0"},"reference-count":22,"publisher":"Oxford University Press (OUP)","issue":"1107","license":[{"start":{"date-parts":[[2020,3,1]],"date-time":"2020-03-01T00:00:00Z","timestamp":1583020800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,3,1]]},"abstract":"<jats:sec>\n                  <jats:title>Objective:<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods and materials:<\/jats:title>\n                  <jats:p>Current eligibility criteria are radiotherapy patients &amp;lt; 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results:<\/jats:title>\n                  <jats:p>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\u2019s 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions:<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Advances in knowledge:<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1259\/bjr.20190673","type":"journal-article","created":{"date-parts":[[2019,10,10]],"date-time":"2019-10-10T16:13:28Z","timestamp":1570724008000},"source":"Crossref","is-referenced-by-count":33,"title":["An open invitation to join the Pediatric Proton\/Photon Consortium Registry to standardize data collection in pediatric radiation oncology"],"prefix":"10.1093","volume":"93","author":[{"given":"Miranda P.","family":"Lawell","sequence":"first","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Daniel J","family":"Indelicato","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, University of Florida , Gainesville , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arnold C","family":"Paulino","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, MD Anderson Cancer Center , Houston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William","family":"Hartsell","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Northwestern Medicine Chicago Proton Center , Warrenville , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nadia N.","family":"Laack","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Mayo Clinic , Rochester , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ralph P.","family":"Ermoian","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, University of Washington , Seattle , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John P.","family":"Perentesis","sequence":"additional","affiliation":[{"name":"Division of Oncology, Cincinnati Children\u2019s Hospital Medical Center , Cincinnati , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ralph","family":"Vatner","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Cincinnati Children\u2019s Hospital Medical Center , Cincinnati , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stephanie","family":"Perkins","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Washington University , St. Louis , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Victor S.","family":"Mangona","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Texas Center for Proton Therapy , Irving , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine E.","family":"Hill-Kayser","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, University of Pennsylvania , Philadelphia , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne L.","family":"Wolden","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, ProCure Proton Therapy Center , New Jersey , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Young","family":"Kwok","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, University of Maryland , College park , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John Han-Chih","family":"Chang","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Oklahoma Proton Therapy Center , Oklahoma , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. Ben","family":"Wilkinson","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Provision Healthcare , Knoxville , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Iain","family":"MacEwan","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, California Protons Cancer Therapy Center , San Diego , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew L.","family":"Chang","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, California Protons Cancer Therapy Center , San Diego , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bree R.","family":"Eaton","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Emory University School of Medicine , Atlanta , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Matthew M.","family":"Ladra","sequence":"additional","affiliation":[{"name":"Department of Pediatric Radiation Oncology, John Hopkins Kimmel Cancer Center at Sibley Memorial Hospital , Washington , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sara L.","family":"Gallotto","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth A.","family":"Weyman","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Benjamin V.M.","family":"Bajaj","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sujith","family":"Baliga","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beow Y.","family":"Yeap","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amy","family":"Berrington de Gonzalez","sequence":"additional","affiliation":[{"name":"Radiation Epidemiology Branch, Division of Cancer Epidemiology and Genetics, National Cancer InstituteNational Institutes of Health , Bethesda , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Torunn I.","family":"Yock","sequence":"additional","affiliation":[{"name":"Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital , Boston , United States"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2020,11,1]]},"reference":[{"key":"2024050215310037100_b1","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1158\/1078-0432.CCR-18-1796","article-title":"Ultrahigh dose-rate radiotherapy: next steps for FLASH-RT","volume":"25","author":"Harrington","year":"2019","journal-title":"Clin Cancer Res"},{"key":"2024050215310037100_b2","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1016\/j.radonc.2019.04.008","article-title":"Clinical translation of flash radiotherapy: why and how?","volume":"139","author":"Bourhis","year":"2019","journal-title":"Radiother Oncol"},{"key":"2024050215310037100_b3","unstructured":"Childhood Cancer Survivor Study: An Overview - National Cancer Institute 2007 [updated 01\/10\/2007 - 07:00\n. 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