PRO-CTCAE

by NCI
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OVERVIEW

A patient-reported outcome (PRO) measurement system developed by the NCI to evaluate symptomatic toxicities by self-report in cancer clinical trials.

The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) Measurement System is a standardized library of question items developed by the National Cancer Institute (NCI).

Product Overview and Value Proposition PRO-CTCAE was designed as a companion to the clinician-reported Common Terminology Criteria for Adverse Events (CTCAE), the standard lexicon for adverse event (AE) reporting in cancer clinical trials. Its core value is to capture the patient's direct experience of symptomatic toxicities, such as pain, fatigue, and nausea, which may be underreported or inaccurately graded by clinicians. This systematic, patient-centered approach enhances the precision and reproducibility of AE reporting and provides complementary data for a comprehensive benefit-risk assessment of cancer therapies. The system is publicly available for use in clinical research at no cost, requiring a Material Transfer Agreement (MTA) with the NCI.

Key Features and Capabilities

  • Comprehensive Item Library: The system includes 124 items representing 78 symptomatic toxicities drawn from the CTCAE.
  • Symptom Attribute Assessment: Items evaluate the frequency, severity, interference, amount, and presence/absence of symptoms.
  • Custom Form Builder: A web-based tool allows researchers to generate customized, study-specific PRO-CTCAE forms in any of the available languages, eliminating manual data entry errors.
  • Multi-language Validation: The instrument has been linguistically validated in over 60 languages, supporting the inclusion of diverse patient populations in global clinical trials.
  • Pediatric Module (Ped-PRO-CTCAE): Separate modules are available for self-reporting by children and adolescents (ages 7-17) and for caregiver-reporting when self-report is not possible.
  • Flexible Administration: Forms can be administered via electronic data capture (e.g., web-based forms, ePRO systems), interactive voice response (IVR), or paper.
  • Conditional Logic: Supports conditional branching logic to reduce patient respondent burden.
  • Data Standards: Data standards for PRO-CTCAE have been finalized in collaboration with the Clinical Data Interchange Standards Consortium (CDISC) and the US FDA to facilitate data integration and regulatory submission.

RATING & STATS

Founded
2014

KEY FEATURES

  • Patient-Reported Symptom Assessment (Frequency, Severity, Interference)
  • Comprehensive Item Library (124 items, 78 symptomatic toxicities)
  • Custom Form Builder for study-specific surveys
  • Multi-language Validation (60+ languages)
  • Pediatric and Caregiver Modules (Ped-PRO-CTCAE)
  • Support for Electronic Data Capture (ePRO) and IVR
  • Conditional Branching Logic
  • Alignment with CDISC Data Standards

PRICING

Model: free
The PRO-CTCAE Measurement System and its items are publicly available for all to use in clinical research at no cost, requiring only a Material Transfer Agreement with the National Cancer Institute.
FREE TIER

TECHNICAL DETAILS

Deployment: cloud, web
Platforms: web
🔌 API Available

USE CASES

Safety and Tolerability Assessment in Cancer Clinical TrialsComplementary Adverse Event Reporting to CTCAEInforming Dose Selection and Benefit:Risk AssessmentClinical Research with Diverse Patient Populations

INTEGRATIONS

ePRO SystemsEDC Systems

COMPLIANCE & SECURITY

Compliance:
FDA GuidelinesEMA GuidelinesCDISC Standards

SUPPORT & IMPLEMENTATION

Support: email, faq, documentation
Target Company Size: startup, medium, enterprise
TRAINING AVAILABLE

PROS & CONS

✓ Pros:
  • +Highly validated and standardized by the National Cancer Institute (NCI).
  • +Free to use for clinical research (no-cost Material Transfer Agreement).
  • +Captures the direct patient perspective on symptomatic adverse events.
  • +Supports over 60 validated languages for diverse trials.
  • +Flexible administration via web, IVR, and paper.
✗ Cons:
  • -Not a full Electronic Data Capture (EDC) system; requires integration into existing trial infrastructure.
  • -Focus is limited to symptomatic adverse events (complements CTCAE, doesn't replace it).
  • -Implementation requires careful study design and item selection by researchers.

TRY IT OUT

ABOUT NCI

Other software by NCI:
CanSurv (Tumor Registry SoftwareOutcome tracking and survival analysis)
SEER (Public Health Reporting SystemsCancer registries)

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