Funded by the DTRF, an important milestone in desmoid tumor research was achieved years ago with the successful development of a Patient Reported Outcome (PRO) tool, now known as GODDESS©, by collaboration among DTRF, Mrinal Gounder, MD of Memorial Sloan Kettering Cancer Center and IQVIA, a leader in PRO development. A PRO tool, which consists of a series of patient surveys, is an important way to have the patient voice heard in determining the efficacy of new treatments.
Once a PRO is developed, it must be validated through use in a clinical trial process. The results of the analysis of patient-reported outcomes in the clinical trial of nirogacestat, found GODDESS© to be “dependable, valid, responsive, and interpretable as a means of examining the effect of treatment on patient-reported outcomes.” This is a significant step forward in facilitating and honoring the patient voice in clinical trials.
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GOunder/Desmoid Tumor Research Foundation DEsmoid Symptom/Impact Scale (GODDESS): Psychometric Properties and Clinically Meaningful Thresholds as assessed in the Phase 3 DeFi Randomized Controlled Clinical Trial
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