What Information Do We Collect?

All pediatric patients (defined as <22 years old) receiving proton 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, such 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 7 PPCR sites through the PedsQL Quality of Life (QoL) survey to further bolster the database. Treatment planning CT and RT plans are submitted to MIMcloud, along with diagnostic imaging at baseline and follow up.

 

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