An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology
| Autor: | Matthew M. Ladra, Amy Berrington de Gonzalez, Daniel J. Indelicato, John Han Chih Chang, Nadia N. Laack, Arnold C. Paulino, B. Bajaj, Ralph E. Vatner, Elizabeth A. Weyman, Sujith Baliga, J. Ben Wilkinson, William F. Hartsell, John P. Perentesis, Sara L. Gallotto, Torunn I. Yock, Iain MacEwan, Stephanie M. Perkins, Beow Y. Yeap, Miranda P. Lawell, Ralph P. Ermoian, Young Kwok, Christine E. Hill-Kayser, Bree R. Eaton, Andrew Chang, Suzanne L. Wolden, V.S. Mangona |
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| Rok vydání: | 2019 |
| Předmět: |
Male
medicine.medical_specialty Adolescent International Cooperation MEDLINE Astrocytoma 030218 nuclear medicine & medical imaging Central Nervous System Neoplasms 03 medical and health sciences Young Adult 0302 clinical medicine Neoplasms Radiation oncology medicine Proton Therapy Humans Radiology Nuclear Medicine and imaging Medical physics Patient Reported Outcome Measures Registries Self report Cerebellar Neoplasms Child Photons Data collection business.industry Data Collection Infant General Medicine Glioma Cloud Computing Multicenter study Ependymoma 030220 oncology & carcinogenesis Child Preschool Quality of Life Join (sigma algebra) Female Self Report business Proton therapy special feature: Full paper Medulloblastoma |
| Zdroj: | Br J Radiol |
| ISSN: | 1748-880X |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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