What Information Do We Collect?
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 collects:
- Demographics
- Diagnosis
- Baseline treatment
- Radiation treatment
- Radiation plans and dose details
- Health details
- Follow-up health information
- Patient Reported Outcome Measures (PROMs)
- Tumor imaging (baseline and follow-up)
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.
