Prospectively register all newly diagnosed patients (children, adolescents, and young adults) with rhabdomyosarcoma and non-rhabdomyosarcoma soft tissue sarcoma and tumours within a non-interventional study (NIS) with the following aims: Primary objectives:  Collect data on patients obtained within routinely workup and standard treatment given in the participating centres outside clinical trials. Off-label use will not be included into this registry/NIS.  Collect information about incidence of different types of soft tissue tumours as a rare disease  Assess the quality of treatment by the means of data collection and data check provided by the registry and the CWS reference centres.  Prospectively collect information on epidemiologic, diagnostic, molecular, clinical and treatment data of patients with STS and other soft tissue tumours to determine whether a relationship exists between outcomes and specific characteristics  Collect survival data including long-term follow-up, quality of life  Observation of the use of approved or licensed drugs INSIDE the approved indications, population, and/or posology (NO off-label use): - RMS treated with standard regimens (only if not included into the FaR-RMS study). No off-label use1 - NTRK positive NRSTS treated with NTRK inhibitors - ALK positive NRSTS (inflammatory myofibroblastic tumours) treated with ALK inhibitors - NRSTS treated with standard systemic treatment. No off-label use1  If additional drugs are approved for RMS/NRSTS in the near future, they will also be documented in SoTiSaR 2.0-NIS  Create a database for the reassessment of the present therapy stratification system and find new risk factors by the linkage of biological information to long-term outcome

 Provide a basis for innovative clinical phase-I/-II/-III trials being prepared in cooperation with other national and international groups. Their feasibility is depending on the existence of a registry for standardised treated patients with all types and risk groups of soft tissue sarcoma (STS).  Provide a basis for innovative clinical phase-II and -III trials and for allocation of patients into phase I-II trials on targeted therapies  Provide a clinical data basis for an independent sarcoma tumour and tissue repository  Identify sarcoma specific surrogate endpoints  Facilitate the conduct of other clinical and laboratory-based sarcoma research  Serve as an information resource for sarcoma researchers, clinicians and patients  Conduct long-term follow-up to assess late morbidities and quality of life (in cooperation with the late effects groups) and to identify late effects of disease and treatment  Implement high-quality information systems by optimising the linkage between data from the registry, data from the clinical trials conducted by the CWS Study Group and data from biological studies e.g. INFORM.

Kinder, Jugendliche und junge Erwachsene mit Weichteilsarkomen und -tumoren