All pediatric patients (defined as <22 years old) receiving radiation at participating centers are eligible to participate in the PPCR. Data is captured via REDCap, a secure, web-based data collection platform with online survey capabilities.
The database is constructed using branching logic, meaning that only fields relevant to the previous answers are presented, and subsequent questions populate based on data input. Additionally, Patient Reported Outcome Measures (PROMs) are currently being offered to patients at 8 of our PPCR sites through the PedsQL Quality of Life (QoL) survey to further bolster the database. Treatment planning chemotherapy, radiation therapy plans, and diagnostic imaging at baseline and follow-ups are submitted to MIMcloud.
Beginning in 2012, the PPCR has compiled information from our 17 participating sites. It captures comprehensive clinical details on patients’ tumors, treatments, and health statuses at baseline, during radiotherapy, and later at yearly follow-up time points. Currently, there are over 1,900 potential data fields used to collect information including demographics, diagnosis, treatment details, symptoms, and follow-up.
Below are summaries of information in the database as of: December 6, 2019
The PPCR is funded by the generous supporters listed below. We are actively seeking support from industry partners and stakeholders invested in accelerating the rate of clinical research in radiotherapy. Gifts of any denomination to the overall project or a specific site are appreciated and will allow incremental progress of this landmark registry.
The project is supported by the Federal Share of program income earned by Massachusetts General Hospital on C06 CA059267, Proton Therapy Research and Treatment Center.