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An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology.
Br J Radiol 2019; :20190673BJ

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.

Authors+Show Affiliations

Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Department of Radiation Oncology, University of Florida, Gainesville, United States.Department of Radiation Oncology, MD Anderson Cancer Center, Houston, United States.Department of Radiation Oncology, Northwestern Medicine Chicago Proton Center, Warrenville, United States.Department of Radiation Oncology, Mayo Clinic, Rochester, United States.Department of Radiation Oncology, University of Washington, Seattle, United States.Division of Oncology, Cincinnati Children's Hospital Medical Center, Cincinnati, United States.Department of Radiation Oncology, Cincinnati Children's Hospital Medical Center, Cincinnati, United States.Department of Radiation Oncology, Washington University, St. Louis, United States.Department of Radiation Oncology, Texas Center for Proton Therapy, Irving, United States.Department of Radiation Oncology, University of Pennsylvania, Philadelphia, United States.Department of Radiation Oncology, ProCure Proton Therapy Center, New Jersey, United States.Department of Radiation Oncology, University of Maryland, College park, United States.Department of Radiation Oncology, Oklahoma Proton Therapy Center, Oklahoma, United States.Department of Radiation Oncology, Provision Healthcare, Knoxville, United States.Department of Radiation Oncology, California Protons Cancer Therapy Center, San Diego, United States.Department of Radiation Oncology, California Protons Cancer Therapy Center, San Diego, United States.Department of Radiation Oncology, Emory University School of Medicine, Atlanta, United States.Department of Pediatric Radiation Oncology, John Hopkins Kimmel Cancer Center at Sibley Memorial Hospital, Washington, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.Radiation Epidemiology Branch, Division of Cancer Epidemiology and Genetics, National Cancer InstituteNational Institutes of Health, Bethesda, United States.Department of Radiation Oncology, Harvard Medical School, Massachusetts General Hospital, Boston, United States.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

31600082

Citation

Lawell, Miranda P., et al. "An Open Invitation to Join the Pediatric Proton/Photon Consortium Registry to Standardize Data Collection in Pediatric Radiation Oncology." The British Journal of Radiology, 2019, p. 20190673.
Lawell MP, Indelicato DJ, Paulino AC, et al. An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology. Br J Radiol. 2019.
Lawell, M. P., Indelicato, D. J., Paulino, A. C., Hartsell, W., Laack, N. N., Ermoian, R. P., ... Yock, T. I. (2019). An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology. The British Journal of Radiology, p. 20190673. doi:10.1259/bjr.20190673.
Lawell MP, et al. An Open Invitation to Join the Pediatric Proton/Photon Consortium Registry to Standardize Data Collection in Pediatric Radiation Oncology. Br J Radiol. 2019 Nov 1;20190673. PubMed PMID: 31600082.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - An open invitation to join the Pediatric Proton/Photon Consortium Registry to standardize data collection in pediatric radiation oncology. AU - Lawell,Miranda P, AU - Indelicato,Daniel J, AU - Paulino,Arnold C, AU - Hartsell,William, AU - Laack,Nadia N, AU - Ermoian,Ralph P, AU - Perentesis,John P, AU - Vatner,Ralph, AU - Perkins,Stephanie, AU - Mangona,Victor S, AU - Hill-Kayser,Christine E, AU - Wolden,Suzanne L, AU - Kwok,Young, AU - Chang,John Han-Chih, AU - Wilkinson,J Ben, AU - MacEwan,Iain, AU - Chang,Andrew L, AU - Eaton,Bree R, AU - Ladra,Matthew M, AU - Gallotto,Sara L, AU - Weyman,Elizabeth A, AU - Bajaj,Benjamin V M, AU - Baliga,Sujith, AU - Yeap,Beow Y, AU - Berrington de Gonzalez,Amy, AU - Yock,Torunn I, Y1 - 2019/11/01/ PY - 2019/10/11/pubmed PY - 2019/10/11/medline PY - 2019/10/11/entrez SP - 20190673 EP - 20190673 JF - The British journal of radiology JO - Br J Radiol N2 - 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. SN - 1748-880X UR - https://www.unboundmedicine.com/medline/citation/31600082/An_open_invitation_to_join_the_pediatric_proton/photon_consortium_registry_to_standardize_data_collection_in_pediatric_radiation_oncology L2 - http://www.birpublications.org/doi/full/10.1259/bjr.20190673?url_ver=Z39.88-2003&amp;rfr_id=ori:rid:crossref.org&amp;rfr_dat=cr_pub=pubmed DB - PRIME DP - Unbound Medicine ER -