The Pediatric Proton Consortium Registry: A Multi-institutional Collaboration in U.S. Proton Centers

Purpose: Survival rates for children with cancer have increased dramatically over several decades, revealing a host of late effects associated with treatment. Proton therapy promises to reduce late effects because of its ability to better localize dose, but the question is by how much? Pediatric health outcomes must be prospectively studied to determine what the margin of benefit is. To facilitate such research, a consortium consisting of pediatric investigators from the US was formed. The goals of the Pediatric Proton Consortium Registry (PPCR) study are to create a comprehensive database of pediatric patients treated with proton radiation therapy in the United States to be used and accessed by participating institutions, to describe the patterns of follow-up at proton facilities, and to describe the acute and late effects in the children treated with proton therapy. Patients and Methods: REDCap is the platform for the ∼600-field database which was designed to capture baseline, treatment, and fo...