Updated NCCN Guidelines for Desmoid Tumors The National Comprehensive Cancer Network (NCCN) has recently updated the NCCN Clinical Practice Guidlines for Soft Tissue Sarcomas, of which desmoid tumors are listed as a sub-type. The NCCN guidelines are often the first resource that medical providers consult to understand desmoid tumors.
Patients can access a patient version here:
NCCN Guidelines
Ideally, desmoid tumor patients are treated by a robust multidisciplinary team of doctors, familiar with both the updated NCCN guidelines and the Global Consensus Paper for the management of desmoid tumors. The consensus paper is a powerful, desmoid-specific resource for patients, caregivers, and medical professionals that answers critical questions regarding approach to treatment recommendations, types of treatments, and pain management. Workgroup Updates Global Consensus Paper A group of nearly 60 desmoid tumor experts including DTRF's Executive Director, Jeanne Whiting, convened at Milan’s Fondazione IRCCS Istituto Nazionale dei Tumori in late June to review and update the Global Consensus Paper on the management of desmoid tumors. We look forward to sharing the revised version as soon as it is available. Publication is expected in early 2024. GODDESS© is the First Validated PRO Instrument in Desmoid Tumors Funded by the DTRF, an important milestone in desmoid tumor research was achieved years ago with the successful development of the GODDESS© Patient Reported Outcome (PRO) tool, 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 surveys which patients fill out, is an important way to have the patient voice heard in determining the efficacy of new treatments. A PRO tool is then validated through use in the clinical trial process. The GODDESS© tool was developed to assess desmoid tumor symptom severity and its impact on patients’ lives. 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 huge step forward in facilitating and honoring the desmoid patient voice in clinical trials.
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