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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.
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.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Data silos, Toxicity and quality of life are undervalued.
Shares Data silos, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.
Shares Supportive care and survivorship roadmap: making treatment bearable → proving it extends life → caring for tens of millions afterwards, Toxicity and quality of life are undervalued.