# An open commons of patient-reported outcome data from cancer trials

Source: https://onco.cc/ideas/idea-moon-open-pro-data-commons/  
OnCo record `idea-moon-open-pro-data-commons` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Pool the side-effect and quality-of-life data patients report in trials into one open database so regimens can be compared honestly and models can be built.

## Summary

PRO data from trials sit in sponsor archives and are rarely shared or comparable. Project Data Sphere and Vivli show that trial data sharing is feasible. The proposal is a dedicated PRO commons with standardised instruments and formats (PRO-CTCAE, EORTC QLQ-C30, PROMIS), mandatory deposition for publicly funded trials and incentives for industry, and tools for cross-trial comparison of symptom burden by regimen and patient characteristics.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Within three years the commons contains PRO data from over 100 trials and supports at least ten published cross-regimen tolerability comparisons that inform guidelines and decision aids.
- Rationale: Tolerability is only meaningful in comparison, and comparison requires pooled, standardised data. The infrastructure for sharing trial data exists; PROs are simply not prioritised.
- Proposed test: Seed the commons with data from cooperative-group trials and one industry partner; measure deposition rates, reuse and citations.
- Maturity: speculative
- Actor: data

## Sources

- Project Data Sphere: https://www.projectdatasphere.org/
- Vivli: https://vivli.org/

## Connected records

- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Toxicity and quality of life are undervalued](https://onco.cc/bottlenecks/b-toxicity-qol/)
- roadmaps: [Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards](https://onco.cc/roadmaps/survivorship-roadmap/)

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