Proton and photon radiation therapy are two distinct modalities commonly used to treat cancer in children, yet published clinical data comparing their effectiveness and late effects remain limited. The Proton/Photon Consortium Registry (PPCR) is an international collaborative effort designed to address this evidence gap by standardizing data collection across 24 North American pediatric centres.

Through funding from ACCESS, Canadian children’s hospitals have joined the PPCR as international recruiting sites. In addition to routine operational data, the PPCR collects an expanded set of demographic and clinical variables. Because no proton centres currently exist in Canada, Canadian sites contribute data for a photon-treated control group — enabling comparative effectiveness analysis and supporting better evaluation of practice patterns and outcomes across radiation modalities. A recent ACCESS-funded study by Yina et al. drew on this data to report outcomes for patients who traveled from Canada to major U.S. proton centres. Among the 219 Canadian children who sought proton beam therapy in the United States between 2012 and 2025, the authors identified non-metastatic disease and a central nervous system diagnosis as significant predictors of better overall survival — findings that help Canadian oncologists more precisely select patients most likely to benefit from proton therapy.

The primary goal of this project is to expand the PPCR across Canada by opening the registry at multiple major medical centres. The study has already launched successfully in Vancouver and Toronto — with Vancouver enrolling 35 patients to date and Toronto enrolling over 180. Notably, Toronto became the first site outside the United States to open this international registry. Efforts are now underway to open additional sites in Calgary, Edmonton, and Montreal.

As a prospective, longitudinal multi-centre registry managed by the Massachusetts General Hospital Cancer Center, the PPCR provides a rigorous platform for systematically tracking acute toxicities, radiotherapy data, and late effects. By pairing clinical annotations with a centralized archive of de-identified treatment plan data, it supports advanced retrospective dosimetric analysis and outcomes-based research. With ACCESS’ continued support, expanding this repository across Canada will build the data-driven foundation needed to evaluate out-of-country referrals, accelerate pediatric radiation oncology research, and make the case for resources and funding for future Canadian proton therapy facilities.

For more information, please contact Renu Jeyapala.