Lay Abstract
Since the last consensus conference 2018 new drugs have come to patients and have been examined in prospective trials (f.e. nirogacestat, MTX/VIN vs pazopanib). An independent institute should analyze available data. Which medical treatments can be classified as active in desmoids and can a hierarchy of use of drugs be generated according to efficacy and toxicity. The latter is an important aspect from the patients’ view.
Scientific Abstract
Re-analysis of existing evidence (since 2018) with particular focus to results of recently conducted and published trials on medical treatment. A couple of recently conducted randomized trials and single-arm trials need to be evaluated with respect to efficacy versus toxicity of medical treatment
Update to Global Consensus Paper
In June 2024, a revision to the Global Consensus Paper on desmoid tumor management was published thanks to the hard work and collaboration of an international group of physicians, scientists, and patient advocates (collectively known as "The Desmoid Tumor Working Group"). Peter Hohenberger, MD, PhD, Bernd Kasper, MD, PhD, and Alessandro Gronchi, MD, also DTRF Advisory Board members, led the group on this project.
Please note: Currently, the updated paper is only accessible with a subscription through JAMA Oncology. After one year, a full version will be publicly available. Patient guidelines are being developed, and we're hopeful they will be published by early 2025, at which point we will make ammendments to the rest of this page to reflect this update.