Proton radiation therapy is a relatively young, yet rapidly emerging treatment for cancer that offers benefits over traditional photon radiation therapy vis-à-vis a decrease in treatment-related side effects and morbidity. This benefit is especially important in children as many of them are cured of their disease.
The Pediatric Proton Consortium Registry (PPCR) is an NCI-supported, longitudinal database aims to ultimately collect a clinical, demographic, geographic and sociological data from all pediatric patients who receive proton radiation therapy within the United States. The PPCR will offer enrollment to any pediatric patient under the age of 22 who receives proton radiation therapy at one of the existing proton centers in the in the US Consortium (currently stands at 9 with several other centers under construction or preparing to open to treatment imminently). Enrolled patients will be followed annually across their lifespan starting from the time of initial proton radiation treatment.
The foremost objectives of the PPCR are to identify existing referral patterns, evaluate the efficacy of protons in relation to other treatments, to evaluate the short- and long-term effects of treatment and to detect changes in these patterns over time. Moving forward, this data set will provide a springboard to hypothesis generation and on such topics as standards of care, treatment delivery optimization, patient outcomes, health services utilization policy, cost of delivery, and the relevance and availability of proton radiation therapy.