The Pediatric Proton/Photon Consortium Registry, also known as the PPCR, is a consented registry composed of pediatric patients treated with radiation. The PPCR was established to expedite outcomes research on radiotherapy and to better define the role of radiation in treating pediatric cancers. All children and young adults (under the age of 22) treated with radiation at any of our 17 participating institutions are eligible to enroll. The registry itself is built upon the NIH-supported, free, web-based data collection platform, REDCap, with over 1,500 data fields. There is a dedicated team performing data entry, database management, and routine quality assurance.
Overall, the mission is to work collaboratively with partners outside of MGH to: 1) describe the pediatric patient population being referred for radiotherapy, 2) identify the patients for whom radiotherapy is most beneficial, 3) provide a platform for comparative research with other consortia, and 4) monitor how well we, as healthcare providers, are meeting our overall oncology goals of attaining high rates of cure while minimizing the adverse late effects of treatment in our childhood cancer survivors.