{"entity":{"id":"idea-moon-open-pro-data-commons","kind":"idea","name":"An open commons of patient-reported outcome data from cancer trials","aka":[],"tldr":"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.","asOf":"2026-09-08","links":[{"label":"Project Data Sphere","url":"https://www.projectdatasphere.org/"},{"label":"Vivli","url":"https://vivli.org/"}],"tags":[],"related":[],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-toxicity-qol","b-data-silos"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"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.","test":"Seed the commons with data from cooperative-group trials and one industry partner; measure deposition rates, reuse and citations.","maturity":"speculative","actor":"data","cost":"medium","horizonYears":3},"route":"/ideas/idea-moon-open-pro-data-commons/","neighbours":{"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-toxicity-qol","kind":"bottleneck","name":"Toxicity and quality of life are undervalued","route":"/bottlenecks/b-toxicity-qol/"}],"roadmap":[{"id":"survivorship-roadmap","kind":"roadmap","name":"Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards","route":"/roadmaps/survivorship-roadmap/"}]}}